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TodayVBS is over , we had the last night of VBS . It was so nice how they ended the week . We had a ice cream social and got to view pictures of the childern from the week on a power point slideshow . It was such beautiful and happy faces !! This week was so rewarding for myself I enjoyed our parents bible study time and so enjoyed watching Destiny be so independent . She really had a blast ! Erwin got to attend 2 of the nights also with us this week - he to thought it was blessing for our family . Destiny , loved getting home and showing us all her crafts she had done this week - and we had to make sure and hang them all up on the bullention board . SHe also received a Read to Me bible as a gift from Calvary . One of my favortives was her picture frame she made - she said they could decorate it and write anything they wanted to . She did hearts with the words : I love God !! Destiny will also be attending Mother's Day out for Special Needs for the month of July at Calvary every Tuesday . I was asked to work in the nusery . Everything works out in God's plans . I was worried about leaving Destiny for a full day - cause of the potty time . But , now I will still be in the church if I am needed .
TodaySecond night of VBS - brought tears to my eyes . I was such a proud Mommy watching my little girl last night . All the kids and parnets went in the stage area last night . Destiny held the bible for the bible pledge and also went up front during cheer time and did the HERO cheer . I was so shocked - Destiny is really coming out of her shell . It was an memorable night for me . *I finally got some pictures loaded today - so hope you'll take a minute & check them out and also leave us a comment !!
TodaySecond night of VBS - brought tears to my eyes . I was such a proud Mommy watching my little girl last night . All the kids and parnets went in the stage area last night . Destiny held the bible for the bible pledge and also went up front during cheer time and did the HERO cheer . I was so shocked - Destiny is really coming out of her shell . It was an memorable night for me . *I finally got some pictures loaded today - so hope you'll take a minute & check them out and also leave us a comment !!
TodayLast night - was the first night of Special Needs vacation bible school at Calvary Baptist Church . Destiny , had such a great time . The whole 30 minute drive home - the radio or tv did not even get turned on . She was full of happiness and wanting to share all the details of her night. It brought me so much joy , knowing that she had a good time . She truly loves learning about God . I was so proud of her too , when she explained all about the necklace she had made A= Accept B= Believe C= Confess . And explain in detail what each meant . Then she told me that she got a prize for answering a question right . They asked her what did Joseph do after the angel came to him in is dreams . She said : he worshiped God ! It just brought tears of joy to know Destiny loves God with all her heart , she truley is "his child" . It was so nice for me to get to go to the parnets bible study too . I enjoyed meeting some new parnets and also enjoyed the bible study . We are both looking forward to the whole week of VBS ! Yesterday , we also went to the library - Destiny now has read a total of 128 books ! And still reading !!!
TodayWe got 2 exiciting calls this week !! The first one was from Canine Assistants . The have reviewed Destiny's application & her Dr.'s application and we had our first phone interview . The lady , said that Destiny was #1 on the waiting list for Louisiana !!! So , now it is just patinetly awaiting - them getting Destiny's sponser . Then we got our call from Catch a Dream with our trip dates . Destiny , will be leaving out on Sept. 19th for her hunting trip . It will be in Southwest Missouri in the Ozark Mountains . We will conitune to get more details as the trip gets closer . Destiny , also has read 115 books as of yesterday . She received her 100 book Summer Reading program cert. yesterday . She is conituning to read - since we still have awhole month ahead in the program left . She will be awarded her medal at the Summer Reading program party in August .
TodayDestiny , had her Well Visit Check-up today with her Dr. Everything checked up great ! She is doing really well lately . She got her Chicken Pox shot today . She also is doing really well with the Summer reading Program . She currently has read 50 books and is still working hard to reach her reading goal . She has set it high , so wish her luck !! She is enjoying all the reading - and I sure enjoy sitting and letting her read me a story . It is so rewarding to hear your child read -- and know that you have been the one that have taught them , such a great gift to have in life !!
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TodaySchool lessons are over !! Yesterday , we finished up all the needed lessons for grade 2 . And my little girl will be a big 3rd grader next Fall . We will be doing the ABecka Program . Destiny , is happy to have a break for the Summer . And we have alot of fun things planned to keep ourselves entertained all Summer . Today , was Destiny's Lung Apt . Her lung Dr. took her off her breathing treatment steriod medicine but , she still is on another type of medicine by breathing treatment . He also has some concerns on her swallowing - dry cough spells , and choking that has increased the last 2 weeks . So , we will have a Swallow Study performed yet again - and we have to go back to see her GI Dr. and GI Sugeron . We will go back again to the Lung Dr. in 3 months and discuss the tests and views from the other Dr.'s on what steps we need to take next .
TodayDestiny had her 8th birthday party this past Saturday . She had a Hannah Montana themed party and cake . She got alot of nice gifts and lot's of money . Thanks to all of our special family & friends that came over to be apart of her special 8th birthday party . It means the world to us !! Yesterday , was Mother's Day . I had a wonderful & special day spent with the 2 most important people in my life Destiny & Erwin made the day so special for me . I am so thankful God contuines to enrich my life with such wonderful memories !!!!
TodayOur precious little girl is "8" today ! What are blessing that is from God . We are so truley grateful for the last 8 wonderful & special years that we have had with Destiny . She is a true inspiration !! Yesterday , she & I had a Mommy & daughter lunch and shopping . And tonight we will be taking her out for dinner as a family . We will be having her big 8th b-day party next Saturday the 12th & we will be sure to update all about her special day .
TodayNew Hot Wheels ... Destiny , received her new set of wheels yesterday . She loves her new chair . She says it is so cool & comfortable . It is a permobil street with camo base and bubble-gum pink seating with the words Princess Monogrammed in Green on the seating back . She chose the design again for her chair herself . This chair reclines both full chair and back and feet reclines too . It has a light kit on it with flashers , turning signals , and head lights . It is so cool - as Destiny says . She is enjoying the new chair already going full force !! We plan to go this weekend to get her a new lisense plates and a few special things to go on her chair to personalize it a little more .
TodayOn Thursday we made the trip to Shriners for Destiny's 6 months check-up . We had X-Rays of her hips & back done again . The back scolosis is at a 75 degree curve now and hips the one hip is dislocated like we knew from the past & the other is starting to be dislocated . We had a meeting with 2 Dr.'s about Destiny's left foot to discuss options we may have . They first wanted to do the ankle cord sugery on it (but they said it - is to risky to do being she can not be put to sleep) . Then they discussed doing Botox on both the right abd left foot but , after them doing a few minutes of researching on it , (they have never done it on SMA patients and they feel it would be way to risky) , so our only option is casting both feet for 6 weeks (with every week having to go down there and take the cast off and recast) after 6 weeks then she would be fitted for afo's and would wear them 24-7 so the feet would have less a chance of dropping again . So , the Dr.'s said to wait 6 months think about it - and to see if the feet get any worse , or she starts having alot of pain then , we can make the choice of casting or not . The left foot is about 50% and the right at 40% . So , at least we do have an option if we need to go with it , it will be painful for Destiny - so we are praying that no new signs of changes with her feet occur within 6 months . We got our call last night , from the Changeller Ball lady , Ball will be beginning soon . They are still working on getting the teams together and coaches . Looks , like Erwin & I maybe coaches this year . We will know for sure later . Destiny , is so ready for the season to begin . She truley loves playing , she could care a less if the team wins the game or loses the game -- just as long as she gets to play !
TodayDestiny has a Shriners Apt. on - Thursday . Please , keep us in your prayers .
TodayDestiny , lost yet another tooth . And one is already coming in - in it's place . The tooth fairy brought her the DVD Cinderlla 3 .
TodayWe got a call last night that Destiny will get to go on a sooner dated Turkey hunt on April 6-7th . And then also get to go for the week trip in May . She is so excited about this earlier hunt !
TodayDestiny , attended her third Shiners Fishing torunment on Saturday . Her Daddy & a friend fished in it also , and placed 5th place out of 100 boats . It was a great day ! Today , we got some exicting news today !! Destiny's third chair has been approved and we hopet o have it sometime this month or April . It was custom designed , with Mossy Oak Camo for the base and hot pink for the seating . (Destiny's design) !
TodayDestiny had her Lung Dr. apt . last Thursday . We received her PFT results & we will have to have yet another PFT on her next visit . To compare the 2 and then go from there with what needs to be done . She has her MDA Dr. Apt. on the 6th of this Month . So , keep us in your prayers .
TodayDestiny , attended the childerns class during our special needs support group on Monday night for the third time . She "loves it" , she loves her teacher and everything about the ark as she refers to it as . What a blessing God has given to our family this semester with special needs support group . It has been thus far a very meaning full and special night of each week for our little family . And double wow - for us with Destiny going alone to class !!
TodayWe got the call tonight from our friend Greg . We are getting to go on a Turkey hunt for a week with Destiny and stay in a cabin like camp at a Ranch in Sanantio Texas . She is so - very exicted about it . She said "momma where are you going to put all my animal mounts at?" Her year of hunting looks very promising already Turkey hunting in May and her Catch a Dream hunt in Sept.
TodayOur news interview went great . We went to town afterwards , and 6 people came up and talked to us about the Stride & Ride . Yipee, the more we can spread the word the better ! We also got Destiny , signed up again for Changeller Ball this year we are so looking forward to it . We even found her a bat that she can acuatally hold & swing all by herself it is so light . We started back attending a Special Needs support group . The main reason for not going the last couple years was Destiny not wanting to go to the childerns class . Although , this they put her with the older kids and she went all by herself to class on Monday night . A very , very BIG step for her !!! I am so proud of her . When she came out of the class she was all smiles & talking up a storm about her time there and anixous for Monday to roll around again . We are gearing up for the Stride & Ride this Saturday . Destiny , is exicted she loves all the MDA events and loves getting to see all her MDA extended family .
TodayEverything lately has been going really good , for us & Destiny . She is beginning to change a little in her looks and personality . She is losing alot of the baby look , getting taller and slimmer . She still loves Art but a new passion is Singing too . We bought her the new American Idol PS2 game that comes along with the mic. she loves it ! Our little star in the making , lol ! Destiny & I will be appearing on our local channel 5 KALB news on Monday morning the 5th for an interview about the MDA Stride & Ride .
TodayWe are having a very nice week . My family (my Uncle & Aunt from Saudi came to our home last night to visit and met Destiny and Erwin for the first time . My couison (their daugther came also and her two little boys)they are from New Iberia . It was so nice to have seen them and for them to met Erwin and Destiny and I to met Trey & Pierre . They also brought my grandmother from Monroe to come and stay at our home with us for a week . Destiny , is really enjoying -- having her with us . Today , we also got Destiny's lift from the house .
TodayYesterday , we went and had a new wheelchair fitting . We are in the works of getting Destiny a new chair . It will be a total differnet style & seating system . More relclinging and reclining feet too . We are keeping the colors a secert though !(LOL)
TodayDestiny received her first deer killed deer mount today . She was so happy to finally get it . It turned out beautifully and we have hung it up with pride .
TodayWe had a great New Years , so very much we have had in 2006 to be thankful for . But , 2007 is off to a rough start . As of yesterday Destiny started showing signs of getting sick . She is feeling really bad today . Thus far all she has is a stuffy nose , headache , runny nose , and just feeling bad , very whiny , & weaker than norm. So , we called the Dr. he did not want Destiny getting out in this cold & very nasty rainy weather we are having today . So , he has called in some medicines and I will go pick them up this evening . Please , keep Destiny in your prayers . I have been sick , Haley , and Wyatt too this week so prayers for them too .
TodayThings have been going good lately . Destiny , has been having lot's of fun doing Christmas Family Gatherings , Christmas Crafts & Baking . She is so anxiuos for Christmas . We go for another Swallow Study on Friday . So , say a prayer for us with that . We got a call today from Catch A Dream Foundation they have granted Destiny a wish for a Whitetail Deer Hunt for September at a Ranch in Missiori . We all are so thrilled and grateful . Destiny , was so happy and for once speech-less . It will be sure an amazing trip for our family .
TodayDestiny , had a Pulmongist Appt. & Heart Appt. yesterday . She had a PF test with the Pulmongist and he set her up for a Swallow Study for this Tuesday and to discuss the G-tube sugery . Then we had the Heart Appt. she had a ECG , Echo , & had to be hooked up to a Heat Monitor for 24 hours . And she had CBC blood work performed and blood work to test Destiny for Thyriod Diease . As soon as all the results come in we come will have another appt. with the heart dr. It was a very stress-ful day . We are praying that , everything comes back good . *We also found out yesterday that Kim , my sister is having a little girl . And they plan to name her Ashlynn Kaye . Please , keep Destiny in your prayers .
TodayDestiny , was admitted on Monday morning to the hostipal with Phemonia in her right lung & fever . She was on IV antibotic , Iv fluids , Breathing Treatments , chest PT , and Bi-pap . Her O2 remained about 94 although she did get choked during the night and it went down to low 80's . It gave us a scare ! She was released yesterday . She has no fever but , still has the Phemoina . She is on 3 Brething Treatment medicines and 2 medicnes by mouth including all her regular medicine . We go back to the Dr . next Thursday for a recheck and to make sure all the Phemonia is gone . Please conitune to pray for Destiny a full recovery . *Also prayers for my neice Haley whom is in the hostipal with high fever and problems from her teeth sugery on Monday .
TodayDestiny is still really sick . Fever has been since Wednesday - and coughing has gotten alot worse . We will be going back to the Dr. in the morning for recheck and to see what we need to do . We pray we don't have to end up in PICU . We did get the Christmas outdoor lights and deco . up & our tree up and decorated too tonight . Destiny , said it was a MUST (lol) she started crying afraid that she would miss Christmas cause she is not getting well . It was so sad - but so sweet too . So , everything is up and beautiful for our little Princess . Please keep her in your prayers !!
TodayDestiny , is sick - went to the dr. yesterday morning . She is on medicines and breathing treatments . Hopefully , we caught it before it got to bad . She did have a good day yesterday , but rought night last night . We are surely praying that our little sugar plum gets well fast . We are thankful though , we get to be home with her for Thanksgiving . I am so thankful for so many things this year - a am really one truly blessed Mommy . Wishing everyone a very wonderful Thanksgiving Day !!
TodayDestiny , had yet another great hunting trip this past Friday - Sunday at Camp Minden in Shreveport . We again met alot of new friends , and got to see some of the old ones too . She went to the shooting range on Friday and got to shoot her 22- shot gun . She had alot of fun doing so . After , shooting we had lunch with everyone . Then Greg & us all went to the Bass Pro Shop where Destiny was VIP for the day . She was treated to a shopping spree . She got $250 in stuff . She was so tickled ! Saturday , she woke-up at 1 am anxious to go , hunting and we did not have to leave for the hunt till 3 am . Hunting is forsure in her blood ! (LOL) Saturday she got yet another doe . She was so happy and exicted ! A 8 point buck also walked out on her but she could not get a shot on him . At noon we had a big cookout and that night a big fish fry at the fire station in Minden . Sunday was yet another great day and another cookout too . Destiny got to met the directors son , Jason who is also 7 and a little girl Anna who was along with her Mom and her Moms patient . She enjoyed playing with the kids . Everyone was so nice to her . Sunday , she was in the Shrev. newspaper - and Sunday night was on the Shrev. news channel . Destiny , also won a deer cleaning knife set in the silent auction on Sunday . It was yet another memorable weekend , full of happiness and lot's of happy tears !! We can't wait till her next hunting trip - coming up !!
TodayMonday , Destiny had an Eye Apt. They did serveral tests on her . And found out that she has very high pressure at 27 and that some of her Optic Nerve is being damaged due to her condition . She now has to wear little cute glasses all the time . We will have to stay on top of the Optic Nerve problem & watch her pressure very carefully so we have her next apt . in 6 months .
TodayDestiny went on her wish hunt this weekend . It was one of the most wonderful experienecs for our whole family . Destiny , was the only little girl on the trip - so you can just image the royal treatment she got . She killed a 13 pound deer Sat. evening . They are mounting it for her ! She also got a pink 22 shot gun presented to her !! It was truly a amazing time something we all will cherish for a lifetime .
TodayDestiny , had a great Halloween hoilday . We went to a MDA Halloween party for the MDA kids at her MDA Dr.'s church in Monroe . It was alot of fun . Destiny , won browines in the cake walk and entered a pie eating contest . We had a Halloween party here at the house with a few family & friends . Roasted hot dogs , had lots of goodies , and craved pumpkins with the kids. Halloween , night we went trick-or-treating at family & friends houses . Destiny , was so adorable . She was a little bumble bee this year !
TodayDestiny , ran a low grade fever yesterday and last night and was really whiny . It was from the Flu Shout I am sure . Thankfully , though today she is make in full swing and feeling great .
TodayDestiny , got her Flu Shot yesterday . So , hopefully by keeping her indoors , out of the cold , and away for any bad germs we will have yet another safe & heathly Winter . We also found out that - the insurance company is working on getting the hostipal bed and inside lift approved . Hopefully , we will have good news with all that .
TodayWe got our SMA 07 calender in the mail today . It is so awesome -- words can not even express the feeling we got when looking at all our friends on each months page . Destiny - had such a good time showing her Daddy all her friends . We will surely enjoy the calender this coming year .
TodayDestiny, is getting a hunting trip wish granted! Both Erwin & Destiny are so thrilled !! For the last 2 years Erwin has hoped to bring Destiny deer hunting along with him. Since, a very young age, Destiny has been following her Daddy's footsteps (in her chair) she always watches her Daddy clean his deer and loves watching the sportsmen channel with him. She is her Daddy's little girl but more than that a little Tomboy. But, due to her weakness -- she cannot shot a gun & because of the cold she cannot get out. But, with the wish trip both of those details are being taken care of. Destiny, will get to use a device that holds the gun up for her and is moved by a joystick (just like her chair) and has a device on it that she breathes in and it shots . (so, awesome) and she will be hunting in a heated box stand! The wish trips are both in November. We will have all the details soon. All we do know is about the gun, stand, and that we will travel to the place, have lodging and all. Dreams continue to come true for our little family!
TodayDestiny's -- MDA apt. went good. The Doctor was really happy to hear that she has been well for such a long period of time. He wants Destiny to get a hospital bed, so she can start sleeping in it. To help tilt her head for breathing -- and help with her numbness and cramps in her legs during the sleep. Destiny also got modifications on her seating on her chair. We will be doing new seating with the wheelchair guy and her PT in December for a whole new seating system . (she has completely outgrown hers) she will get to keep her base of her wheelchair though being it is still in great working condition. We had a really nice week visiting with family during our stay in Monroe. Destiny, was spoiled as usual and enjoyed being with everyone.
TodayPlease , keep Erwin & his sister & brother in your prayers . One of Erwin's sisters lost her battle with Cancer .
TodayDestiny , was in the local MDA newsletter as one of the three MDA families that raised money in the "Be a Star" campaign for this years MDA telethon . We are so honored and so proud ! And we again thank all the companies and people that donated in her name .
TodayDestiny - is sick with a resiptatory infection and fever. We went in Tuesday morning at the first site of her coughing and getting sick . Hopefully , we have caught things in time and she will the infection wil not get a chance to get in the lungs . She had blood work done and was given one medicine and one antibotic . She is feeling a little chipper today although , the cough is still very wet and deep . Please , keep her in your prayers .
TodayOn September 9th , Destiny made a milestone ... On the 9th it was 2 years since Destiny had been admitted to the PICU for Phemonia . "YIPEE" . We truly are so very , very blessed ! We will contiune praying that she stays well . With Winter months fast heading our way we will be being very carefully to where we go & watching out to not be around anyone that is sick . Lately , Destiny has been doing great . She loves school she favortives for 2nd grade are still Math and Art . But , also now Reading . She is getting to be a little book worm . She enjoys watching movies , shopping , playing computer , playstation , board games , barbies , pollys , and dolls . She is very sassy and indepedent . She all around a wonderful and happy 7 year old little girl .
TodayThe 2006 MDA Telethon went wonderful. They raised a lot of money for Jerry's Kids. Our family had an interview with Mr. Neil on Monday at noon that went great, although there were many, many tears. It is still hard talking about our life with dealing with SMA. I don't think it will ever get easier. Destiny, as always was a little sweetheart on TV she smiled the whole time, she made silly faces, and even spoke . (what a proud Mommy I am) On Tuesday we got to go pickup our new wheelchair assebile vechicle and boy do we all love it! It is awesome ! It is a 2007 uplander it came straight of the line at Chev. with only 20 miles on it? It is Gold Mist in color with cashmere interior , 6 disc CD changer, onstar, hands free phone, entervan 11 conversion, power opening door, power ramp, and kneeling system. It is going to make life a lot easy on us. It has been much needed for along time coming.
TodayWe are of today to Monroe for the 2006 MDA telethon . Destiny , will appear on TV this evening and Monday . Her interview is scheduled for Monday at noon . She has worked hard and raised over 500 dollars this year for the telethon . We will be staying in a Hotel for 2 night and not coming home till Tuesday evening , because we are going to be picking up our new vechicle on Tuesday . Can't wait to share our Labor weekend update when we get back and all the details on our new ride . * HAPPY LABOR DAY !
TodayOn Friday Destiny went to the "Fill the Boots" with our local Alexandria Firemen . She was interviewed by both our local newspaper & our local news . Friday night we aired on 3 different times . And Saturday Destiny was in the paper .
TodayGot the call usterday that our vechicle is completly done . And will be shipped directly from the main Chev. plant soon . We are so "ready" for it . We are counting down the weeks !!
TodayOur hearts & prayers go out to the Coggin family . Little Grace lost her battle with SMA . * I pray that a cure is found for SMA SOON !!
TodayAlot going on around here for us . We finally are in the works of getting a new vecicle (may I add that it is fully assebile for Destiny & her chair) no more lifting her or the chair in & out . She will be able to drive in and out all by herself . It should be in - in about 4 weeks . We are so ANXIOUS & READY FOR IT !!! I will be sure to post all the details when we get it . School lessons started today . Destiny , is even more ready to learn this year than years before . She is getting so big and so smart . She has such a ready to learn and what to learn more attuide . She is a BIG 2nd GRADER this year . My baby is growing up ! We have a BIG & IMPORTANT DR. VISIT next week . I am so nervous about it , it is on a little of everything . Her spine , heart , hips , and foot . PLEASE KEEP US IN YOUR THOUGHTS AND PRAYERS . Everything else is going smoothly we had a wonderful Summer and looking forward to a GREAT FALL . Destiny will be busy , busy this month doing boot drives with the Firemen & then next month we do the MDA telethon . Thank everyone that contiunes to check in with us and pray for Destiny . We love you all !
TodayDestiny's team wond 1st place in All-Stars games . They got Trophies & passes to Fun Zone . We enjoyed our second year playing Changeller Ball .
TodayTake me out to the Ball Game ... Destiny, was one of 4 from her team that got picked for All-Stars . On Friday night we attended the World Series Ball Banquet . Saturday night was our first Ball game for All-Stars we lost 12-9 then Sunday night was our second game we won 17-5 . So , Monday night will be the last game to break the tie and to place the teams in 1st and 2nd places . Wish us Luck !
TodayVacation was lot's of fun! We went to Prattville Alabama to stay and visit with Erwin's Aunt. We went to the Montogermy Zoo and the Mann Museum , Atlanta Georgia to the World's Largest Aquarium, and to Gulf Shore's. In between all that we did lot's of shopping too. Destiny, has been resting up this week. The trip tired her a lot. Tonight starts our first practice for All-stars. Destiny, is really excited only 4 children from her team got picked and she was one of them.
TodayDestiny , finally got over the stuffy nose and allergies . Thankful for that ! She has been enjoying the Summer staying busy with having fun and being a wild little 7 year old . She is a spoiled rotten spit-fire !! Our fourth of July went great , Destiny got overly spoiled my her Daddy with all the fireworks he boought her . They went shopping without Mommy for them , so they spent lot's of money of course . She has always loved fireworks and never has been scared of them , we enjoyed watching her face as the big ones were popped ! She was so HAPPY ! We are counting down the days till Vacation . Friday will be Erwin's last day at work and he is off then we leave out Tuesday !! Destiny , has a dentist apt . on Monday for her regular yearly check-up . So , wish us luck on that . Hope everyone is enjoying their Summer !! ** Prayers needed for our friends Mr. Neal who had a Stroke on Monday . ** Prayers needed for our very close friends Theron , Stef , & Wyatt whom were in yet another very bad car acciendent yesterday evening .
TodayDestiny has been a little sick since Sunday evening . She is congested , stuffy nose , & fever off & on . She is still happy & outgoing altough late in the afternoons she gets whiny and feeling worse . She is taking medicines & breathing treatments we hope that she soon gets better . Even though this is her upper respiratory stuff acting up due to allergies , it still is always scary with her being sick . So , keep us in your thoughts and prayers PLEASE .
TodayI have some very sad news to report - Destiny's puppy Wishes got lose and got ran over this morning on our HWY & got hit and passed away . We all will feel a great lose , for Wishes was a special little puppy to us all . Destiny , is accepting it ok . We will not be getting any other dogs now , till Destiny receives her Service Dog . It is just to hard for Destiny to get around other animals like small dogs and kittens in her chair . So , for now we will just love our bird and fish . ** Special Prayers for the Jason Belgard & family , Jason's daughter was in a car accident and got killed on Thursday .
TodayToday , Destiny received a VERY SPECIAL package in the mail today . It will be one that we will treasure forever . Today , Destiny got her Cole's Quilt . It is a organization that hand cross-stitches and quilts for childern with SMA . In memory of Cole Webb another little boy - some of you that read Destiny's guestbook often saw our post about Cole's passing . Destiny's quilt is breath taking and every piece of the quilt fits Destiny's personailty to a tee . It is big enough to fit on her twin size bed but , we have chosen to get in framed in a shadow box (we will hang somewhere so everyone can view it without it ever getting damaged) . The backing is pinks , purples , yellow , and all light colors / with flowers & fairies everywhere . She has 16 blocks that all have been stiched by different people all over the world . I will do my best to describe each sqauare : a little angel holding a doll with the name Destiny Hope under it , little girl praying with God loves me , 6 little fairies with name Destiny Hope , little angel with teddy bear with phrase its not how deep the sea its not how wide the sky its how sweet the time from hello to goodbye , big dragonfly , cherub with the name Hope , heart hand and house , little angel girl with pony , Destiny Hope with unicorn , Destiny Hope with 2 dragonflies with flowers , yellow fairy with Destiny , green fairy with Destiny , purple fairy with destiny , fairy with flower , flower with Destiny Hope and word Love , and a poem I had written that is on her poem page on this site with her date of birth below it . I want to say a special thanks for this wonderful gift to Cole's Quilts Organization , Kristin Webb ( a wonderful Mother) Cole Webb (your precious face will be in our hearts and memory forever) Linda Zuroff (Aunt Linny) , and all the many stichers that worked on Destiny's quilt . We are so honored !!! "Destiny teared up today when she saw her quilt , she has known about it for over a year now and was so exicted" . **SMA is the #1 genetic killer of childern . 1 in every 40 people carry the gene . 1 in every 6,000 baby is born with SMA . THERE IS NO CURE ! ** One day we pray we have our cure !!!
TodayIt has been a GREAT NIGHT !! We had a ball game tonight & ball picutres . Destiny , hit a HOME RUN tonight the score for our team was 1-4 . Which means , Destiny was the only one to score a home run & point for their team . Yes * we are some very proud parents tonight !!! She also learn a new throwing style she runs then spins then throws !! (LOL) it is to CUTE ! It is so awesome seeing Destiny play ball she truly loves it , the whole time she is at pratice & at games she is glowing . We also finally got the report back from her PFT & Sleep Study that was done in March . The Lung Dr. has called in new setting for her bi-pap , and we will be getting a new apt . for further details about the results .
TodayHappy Mother's Day to Me ! I am so blessed for many reasons - that God gave my a chance to bare a child . That I got my little girl (what both Erwin and I wanted a precious little girl) . That we as a family are battling the DX of SMA as a team & not giving up Hope . That Destiny is not only the smartest , cutest , and most beautiful child but , she is all MI NE . That God has blessed me with yet another Mother's Day with my little girl . "8" wonderful Mother's Day celebrated with Destiny what a blessing in it self . So , on Mother's Day no gift , card , or eating out @ at fancy resterant would ever come close to being anywhere close to the wonderful blessing I have already been blessed with being a Mother !!!
TodayDestiny - had a wonderful birthday party yesterday . It was Polly Pocket themed (the cake turned out beautifully) ! We had close family & friends at the party here at home . Destiny , enjoyed her special day and got alot of nice things . **Prayers for our friend Stef whom is back in the hostipal with some problems due to the wreck and sugery she already had .
TodayDestiny , had a great 7th birthday on Wednesday . On Thursday we left out for a MDA/Citgo event where Destiny was a guest of honor . We got to stay in a Hotel and Thursday night we went to a Banquet , it was so nice . Destiny , had been asked to do some artwork and it was auctioned off at the banquet - it went for $1000.00 dollars (WOW huh) ! Friday , was the annual MDA/Citgo golf torunment . It was nice . This made Destiny's 2nd year of attending the event . Today , is her birthday party day - Happy party day to you Des-a-Doodle !!
TodayI wanted to wish my precious daughter a very HAPPY "7TH" BIRTHDAY today !!! We have been so truly blessed with 7 years of memories , 7 years of laughter , and 7 years of hope . Destiny , contiunes to have her ups & downs like any other SMA child but - she contiunes to make the most of everyday and wakes each morning with a HUGE smile on her face . She always seems to find the joy in every little thing . I am so blessed today to be celebrating yet another birthday with her . We are celebrating her day by going to a painting place where you childern can paint pottery , plates , & things . Her party will be on Sunday this year she chose Polly Pocket themed deco . We are looking forward to yet another wonderful year with our little girl !!
TodayFirst ball game of the season ... Destiny had her frist ball game of the season last night . Her team won 4-2 . She is so happy and bubbly when she is on the field , I think she is for-sure a tom-boy in everyway . I asked her yesterday , if she wanted to join the cheer team she replied saying "Mom , I like cheering but , that is just not my thing" (LOL) it was so cute she would rather have a ball or fishing pole in her hands !! I really think Changeller Ball is wonderful for her she gets to be around alot of special kids , and on each team there are 2 wheelchair players , which is awesome for her to see other little kids like her . **GO DES** you rock !!
TodayPrayers going out for the Tyson family today during their time of loss . We all will hold the memories of Uncle Howard forever deep in our hearts !
Today"HAPPY BIRTHDAY TODAY" TO THE BEST HUSAND , BEST FRIEND & DADDY ANY MAN COULD ME !!! We love you Erwin , and hope that today was wonderful in everyway for you . Today , we had our family & friends over for Erwin's birthday party/cake & Easter cookout/Egg hunt . We all enjoyed the day being with the ones we love .
Today**FIRST REAL HAIRCUT** !! Destiny , had her very first real haircut today . At 2 she has bangs cut & at ages 3-6 she had slight inch trims . Today , she got 3 inches cut . Not , that you can even tell her hair was cut !! (LOL) it is so long it still touches her bottom , but she now no longer sits on it . (LOL) Three inches was all that needed to be cut off (Daddy was thankful for that) .
TodayPlease keep the following in your prayers .. My Sister Kim - has been really sick since Monday on Wednesday she went to the ER and was hooked to IV she was complety dehydrated , and has a serve stomach virus . She is home today on Medicinces and Pain med.s and can not return to work for a week . Also my step-daughter Lori has the same virus and has been sick since Tuesday . (although she was able to go back to school today and is feeling better) . Destiny , started a dry cough today & she not feeling to well . We are keeping our fingers crossed that it is just a allergy and sinus problem and it will not lead to more .
TodayYesterday , we attended The Shriners Car Show . Destiny , was a guest there . She loved looking at the cars and the Shriners were all so , sweet to our family . After , our family went on stage & I gave a speech they presented Destiny with a T-shirt & Teddy Bear . We love supporting every organization that has helped and contiunes to help us during our journey y with SMA . It not only is great to support , but also great that we are spreading the awareness about SMA which hopefully is getting us that much closer to our cure one day .
TodayYesterday , evening Destiny had her first ball practice of the season . She enjoyed meeting so of her new team-mates and seeing some of her old team-mates from last season again . She practiced really good , she has gotten alot better with her throwing - she is so cute she gets a running start in her chair and then throws the ball . Her favortive is batting she loves to bat and then zoom to the bases . She giggles the whole time ! It is so awesome for her to play changeller ball , she gets to enjoy playing ball , be around other special kids , and both Erwin & I love seeing her interact with others . It is sure to be a great Ball Season !
Today*** Please say a special prayer for our little friend Kaitlin - who leaves today to be admitted in the hostipal and will be having a very serious sugery on Tuesday . Pray that Kaitlin makes in through the sugery safely & her recover goes smoothly . Also pray for strength for her Mommy & Daddy & grandparents . And understanding prayers for her little brother . "Little angel Kaitlin we are praying for you sweetheart" !
TodayDestiny , went to see the eye dr. yesterday . She is having some senstive again with her eyes . The dr. gave her some mediciaided eye drops to use everynight . Then she goes back in May for some tests to see if she needs glasses again .
TodayOkay - everyone hold on to their seats ... We got to answer the big question tonight from Destiny . She asked , "Mommy : where do babies come from" . I should have known that question was going to arise soon . The last several weeks she has been playing baby-dolls & acting out the Mommy role with her babies . She also is really big into her barbies (we have had all the barbies out , barbie car , & barbie house since last week). So , I explained the best I could about her question . I have always been honest and upfront with her about life and things . But , boy was I not prepared for that one , at least not yet ! (LOL)
TodayJust wanted to BRAG a little . Destiny , is doing great with her school lessons . She is learning to teall time now & the BIG NEWS she is mastering the world of READING ! I am so very proud of her , she contiunes to amaze me !!!
TodayHAPPY 7TH ANNISVERSARY ~ to my wonderful husand Erwin . I love you more & more everyday . We have sure came along way ! Even though sometimes often worried does life ever get easier , we seem to always pull together though it all instead of apart . I thank you for the most memorable & special last 7 years . You make me whole !!
TodayDestiny's. Apt. went well. She had her PFT we will receive the results from that on our next apt. While there she was fitted for a new type of device for her BI-Pap. Her skin sensitivity has gotten worse & the BI-Pap masks kept breaking down her skin and made blisters. So, she was fitted for a nasal snap. The Sleep Study went good. She had a Slit study. She slept for couple hours with nothing, couple hours with O2, and the rest with BI-Pap. She go to use the nasal snap & did great with it, so we came home with 2 of them. The tech said, her setting on her own BI-Pap were 10/4 & Destiny showed during the Study that she could not tolerate those settings. She could do 8/4 though. On 10/4 Destiny, was hyper venting. The tech said that the Dr. reads his own reports & we should hear something from him soon about the Study results. The Tech did say that Destiny did just as good without the BI-Pap as with. So, that is GREAT! That means, being she has not been real sick her lung strength has remain at the same straight and they have not weaken. ** I sure pray we can keep, keeping her well !!
TodayWe are traveling to have PFT & a Sleep Study today & tonight in Baton Rouge . Wish us luck & prayers for us a safe trip . We will return home on Friday sometime . I will be sure to update soon as I can . Thank everyone for my birthday wishes & gifts yesterday !! A big thanks to all the family that spent the day with me . And a BIG thanks to my husand and Destiny (you make me so happy everyday - not just on my birthday and that is a wonderful gift anyday) !!
Today* Special prayers for our friend Katylin ! And birthday wishes to myself today , I plan to spend the day enjoying being a Mommy !!
Today* Prayers for my SMA buddies Aschdon & Micheal that are both sick and in the hostipal .
Today**Please pray for my neice Haley - who is very sick . She was rushed to the ER on Tuesday night with 104.7 fever . And taken back to her Dr. this morning with fever and a severe cough . The Dr. ordered X-rays and had blood work done . They think she may have Phemoina . The are suppose to hear back from the Dr. this evening , rahter or not she will be admitted to the hostipal .
TodayYesterday - we attended our second year at the Shriners Bass fishing torunment . Erwin , fished in it and placed in 15th place . Destiny , was one of the guest speakers for the event . She loved all the attention from the Shriner Men . We also got to met - a little boy with SMA 2 and 7 years old (how neat) he is not from our area , but his Mom and I exchanged numbers to get the kids and our families together soon at our house . Destiny - was real shy towards him & he towards her too . It was very cute watching them look at each other (what are the odds of meeting another child with SMA 2 and the same age) ! We thought it was awesome ! We will get to met back up with them - in April for the Shriners Easter celebration . "We can not wait" ! ** Prayers please - for my sister Kim whom was admitted to the hostipal yesterday evening , she is in alot of pain and real sick . So , please keep her in your thoughts .
TodayDestiny , is WELL ! She is back to her spunky and rotten old self !! We are happy to have the old Des. back . She only now has a very dry cough now . We are keeping our fingers crossed , hoping that Destiny stays on the good side , and is able to have some Mardi Gras fun this weekend . "LAISSEZ LES BON TEMPS ROULER" ! (let the good times roll)
TodayIt's looking like the Princess is FINALLY starting to get well. She has a slight cough now, not rattles or wheezing. Her O2 is back up. She still has a fever off and on, but they say fever is a sign of the body fighting things off, so we are making sure to still keep an eye on things but things are looking up again. We truly believe that without the power of prayer, support of our family & friends, Irwin & My will to never give up on Des. & one special little girls amazing HOPE for a new day we would not have made it through all of this without going to ICU. We fought this battle hard. The next several days -- we will remain taking it easy and staying home away from the winter germs and out of the cold weather. Hoping by the start of next week Des. is completely well and back to the normal routine. Thanks - again to all the Emails, Phone Calls, Mail, Gifts and Love you all continue to show Destiny. We appreciate you all !! And many prayers to all our SMA friends that are sick at this time. And special thoughts to all our SMA families that have lost their angels this winter.
TodayWe had a pretty , uneventful weekend . Stayed indoors trying to get Des. well and out of the chill weather we are having . Friday - Destiny did not even get out of bed she felt really bad , high fever still & coughing . Saturday - she got up and played for a little while she countiuned to run high fever , coughing , wet rattles , & whezzing . Sunday - she seemed to feel better finally got out of PJ's and wanted to get dressed fix her hair and get pretty . She a slight cough during the day . By night time she started running fever , rattling again , and coughing more . She also threw-up (due to muscas) . This morning thus far she is coughing only , but it is a very deep and wet rattling cough . She is starting to pick on things with her eating so that is better than nothing . We are doing lot's of breathing treatments , bi-pap and all the med.s . Today , we are going to wear the bi-pap during the day to help make sure her lungs are not collasping . We will see how today goes and then go in to see the Dr. in the morning if she is no better . PLEASE - keep her in your thoughts and prayers , we got to get her over this . It has been so long since she has been sick , that it is really scaring me to have to go to again to PICU . I know how bad it was a year and half ago for her to fight this junk off .
TodayWe had a really rough night last night , Destiny got about 3 hours of sleep . She coughed all night and ran high fever again . At 4 a.m. she started crying , I got up to comfort her and when I did she was pale , pale and had tremors really strong . We took her Pulse OX and it was 88 which scared both Erwin & I . We started breathing treatments and increased her Bi-Pap setting . It finally came up to 92 which still is not very good , but at least we got it up in the 90's . I listened to her chest and sounds like , is has a little whezzing going on . This morning , is finally is trying to eat . We are just praying and taking this all minute by minute . The only things that seem to comfort her - are cuddling & her bathtime . We know that right now - home is the best place for her . ALthough , the thought of going into PICU is getting closer in thought . We pray that today she has a better day and a more restful nights rest tonight . Please , keeep the prayers coming . Thanks - to all of you that have emailed , called , or signed her guestbooks . I helps to know we have all of you to turn too . I will try my best to keep you all up to date on Destiny . *Thank you Ms. Linda Poole - for the big purple Elephant you mailed Destiny ! She loves it !!!
TodayWe need your prayers "PLEASE" ! As you all know it has been a year and half since our Destiny has been sick . Well , as of yesterday we are battling the sickness ! And we need your prayers !! On , Wednesday night Destiny had a stuffy nose by bedtime she was running high fever and coughing . So , Thursday morning we got up and headed straight to the Dr.'s office . She was tested for Strep & Mono thankfully she has neither . But , is has a bad cold and the flu . What are the chances for her getting the flu being she has had her flu shot (well she has it) . She also has a red , red thoart . She is on liquids to help the thoart and 3 medicines on top of the 7 we already take and the 2 breathing treatments are upped too . She did not sleep well last night , coughing and running high fever most of the night . On top of that , her new bi-pap mask broke down her skin again , so Daddy is off to purchase a new gel mask for comfortable and easy on the skin . Her O2 is low , so we are bi-paping 24 hours a day today . She is not up to her normal spirits or eating , so that is a scare sign for us . She always gets that way when she is really , sick . Just please keep us in your prayers and we will be sure to update as things go on . Love and Blessing to all and lot's of prayers for my baby-girl !!!
TodayBALL SEASON HERE WE COME !!! Today , we went and registered Destiny for Challenge Tee Ball. This will make Destiny's second year. She is really excited about it! This year they will each get two uniforms and also get to play in the Dixie Leagues opening season, have professional ball pictures taken, & play at our towns new complex .
TodayDestiny , received all her papers today for MDA Summer Camp . She was so very happy and exicted ! As soon as we opened the package she wanted me to get all the papers signed and mailed back out . Now , let the shopping begin !! Destiny - will get to attend her first little real Prom at camp !!! So , we will have our eyes open for the perfect little pink dress !!!!
TodayWe heard for the Pulmongist on Friday - we will have Destiny's PFT & Sleep Study on March 23rd - 24th .
Today*** Please say a prayer for our Friends Stefanie , Ms. Janice , & Wyatt . They all three were in a bad car wreck yesterday evening . I eighteen wheeler hit them . All three of them were taken to the ER . Wyatt - is doing ok (he had lot's of cuts , brusies , black eye , and bursted lip & nose . Stefanie , was sent to LSUA Medical Center in Shreveport she will be having sugery on her ankle , broke leg , and rod and pins placed in her hip bone , Ms. Janice had sugery on her broken leg last night . Many prayers are needed for all three of them , Theron , Mr. Herley , all the family , and there close friends . **It will take lot's of prayers to everyone through this .
TodayWell - we did not get to go to have Destiny's Sleep Study or Lung tests yesterday . We are having problems with Destiny's Bi-Pap mask , and have to go Tuesday to have a refitting for a new one (once again) . On top of that we also have to go and get a Echo performed on Destiny's heart again . So , the Lung Dr. is rescheduling Destiny's apt . to come to Baton Rouge for either month of Feb. or March . It will all work out , I am sure in time . Destiny - is doing really well still has not gotten sick . We are really working hard on keeping her happy and healthy ! And everything that we are doing sure seems to be working . (We are blessed) ! She is growing -growing and changing it seems each day . Her personailty , will probaly always be sweet , caring , and such a loving one . Although , she has finally broken out of alot of her shyness - is a little spit-fire (alot like her Daddy) and she is very funny , silly & loves to be center of attention (alot like Mommy) . We have alot of wonderful memories and we have are praying that we have many-many one memories to come .
TodayYet , another child with SMA has earned his wings yeterday . Little "Timmy" - may you dance with the angels and play with little Payton . My heart aches for all the parnets whom's childern have lost their battles with SMA . My heart also aches of the unknown for my little girl . SMA is a horrible diease and I pray that all of us living with the DX of SMA for our childern we one day have a cure .
TodayPrayers and caring thoughts going out to one of our SMA families (The Freedman's) during their loss with SMA . May little Payton dance with the angels .
TodayDestiny and Mr. Bear along with 2 other of Destiny's bear friends had a Beat Tea-Party yesterday . It was so cute watching Destiny have this tea-party ! She is a doll as always and each day brings me more & more joy !
TodayDestiny's Guest finally arrived yesterday - his name is Mr. Bear !!! Mr. Bear , is a little bear that is making his travels for a week with many of the kiddo's from our SMA Support group . The kids get to have him for awhole week , Mr. Bear comes with a jornal to write his daily activites in . We also will have to buy him some sourviers from Louisiana . Destiny , was so tickled yesterday when we opened his box . I am sure the week will bring lot's of fun with Mr. Bear . Also , yesterday Destiny's chair got many modications . Her chair got new arm-rests , 4 new tires , new swing away joystick , new reclining switch & a nice new foot-rest . We hope that everyone is doing good & staying warm . Blessing to everyone !
TodayDestiny , has no more fever today !! Her gums have seemed to calm down from giving her the fits some too . We love her new improved Bi-Pap mask , she sleep wonderfully with it on again . Although , being it was new it broken down her skin on one cheek and formed a skin blister , but today it looks alot better , in 1-2 more days hopefully it will be complety healed . We will be having a special guest in our home for a week , he should be arriving to our home real soon . So , check back with us soon to find out who he is !
TodayWe finally received Destiny's new Bi-Pap mask & head harness today . We are thankfully , it finally got here . Destiny , is happy to have her "Pappy" back (her bi-pap mask) she knows how much better she rests with it . And Mommy will rest better too , I will not be keeping my eye on the Pulse OX machine all night . We are also happy to have it back , so we can start back with Destiny's daily naps with the Bi-Pap , exspecially on days like today - she is still running low grade fever , and her tooth is really giving her the devil , she has also been real tired and weak today .
TodayWell , we have been busy lately getting the house back to normal from all the hoildays . Destiny , is doing good . Although , she has been very tired & weak more than normal lately . Plus , she is finally cutting one of the bottom teeth she had lost . So - Mommy has had her hands full . But , oh how thankful I am that my hands are full !!
Today"HAPPY NEW YEAR TO EVERYONE FROM THE SANCHEZ FAMILY" !!! Our family had a very nice 2005 , even though we have had rough times during the past year . Most of our memories are good ones . So , for 2006 we pray that Destiny stays healthy and happy ! And that each day the scientist get closer to finding a cure for SMA .
TodayDestiny - was very tired and whiny yesterday evening . Last night at bedtime her O2 was around 94% . We think her numbers were down because of her being so wore out and tired . I gave her some mortrin to help her rest . She slept good all night , this morning she seems ok although she acts a bit tired . We will be watching her close to make sure she is not getting sick . I feel that she is just needing to catch up on her rest from all the hoilday exitement . Hope everyone is having a good week , prayers going out to all the sick ones .
TodayWell , our hoilday went wonderful even through it was a rough time for Erwin . Destiny , loved every minute of her hoilday . We loved watching her little face lite up with every gift she opened . We so , much enjoyed this years Christmas ! What a blessing it was to have our little girl for yet another hoilday season . We also got some exicting news to start off our week - today Erwin got a BIG 4 POINT & a BIG 8 POINT !!! Way to go sweety - Mommy finally gets her rack on the wall !!! (LOL) We hope everyone took the time this hoilday to cherish all the little things - for each day we have is a blessing !!! **MERRY CHRISTMAS TO EVERYONE** !!
TodayWe have some sad news tonight - Erwin's step-dad pasted away this evening . Thankfully , Erwin's good friend called him to let him know . *Please , pray for Erwin this will be a rough time for him . **And also pray for Erwin and Uncle Leo to have a safe travel to Alamba where Erwin is going to pick-up his Aunt Cene . He should be home by 4 Thursday .
TodayWell , yesterday was one of those rough days , here at our house . First of , all yesterday evening Destiny was having more tummy problems . Her muscles seem to be very weak now so her regular amount of her tummy medicine does nothing for her now . We called the Dr. and he changed the amount of medicine to everyday now instead of every other day . We started the everyday dosage today (keeping our fingers crossed that , that helps) . Then secondly , last night Destiny awoke with a really bad spell of night sweating , crying , and a very bad case of her tremors . Once , I got her back to sleep she slept peacefully the rest of the night . (Although , Mommy did not cause' of worring about her baby-girl . Today - seems to be a better day so , far . Destiny , is rested and very happy this morning . **We are thinking and praying for our little friend Katiyln who is back home now . She has a long recover , but we have faith that she will be back feeling great soon .
TodayDestiny , is doing great ! Her has been a little more tired than usual , but her Bi-pap mask broke so she has not been resting as well . (We have called in for a replacement mask & hopefully we will get it in real soon). She is getting in the Christmas mood and very , very anxious for Christmas Day . We heard from our Pulmongist today - Destiny will be going January 26th -27th for her PFT testing and a Sleep Study . We wish everyone a bright hoilday season full of HOPE for the New Year !
TodayWe just received Destiny's MDA goodwill ambassador letter in the mail today - she was again chosen the represent Ark-La-Miss as 2006' ambassador . We have enjoyed the past year , of traveling around to various events adn telling our story and making people more aware of MDA and SMA . Since , age of 2 Destiny has been apart of MDA and all the events and wonderful people she has met through-out the years has help her to more understand her DX and she has made many , many great friends and also touched many , many hearts . This is an honor for our family - and one we will be dedicated to this year as much as we have been in the past years . *** WAY TO GO DESTINY HOPE ***
Today** Many prayers going out today , for our little friend Katiyln , her Mommy , Daddy , and brother Ethan . Katiyln will be having a very serious and risky sugery today . We are thinking of the McNeely family today with lot's of prayers for you our little Princess !!! ** Deepest Condolences - to the Saville family . Their precious little girl , Morgan lost her battle with SMA this week .
TodayDestiny , awoke last night about 11 p.m. crying and having some really bad tremors . It was a rough night , with little sleep for all of us . We are thinking with all the weakness she had last week & this spell last night she is going through the stage of losing stregth and regression . It has been about 3 years since she has had a real bad case of regression , so I plan to let her take in easy for the next couple days . This morning she awoke happy and just a bit tired (from little rest last night) . We got the Pulse OX while delivered while we were gone , so I will take her Pulse and O2 and depending the numbers I may let her lay around today and wear her Bi-Pap most of the day . It is very hard to see her so weaked , but I am just so thankful she has no signs for sickness . It has been 1 year and 3 months with no hostipal stays and we hope to keep it that way !!!
TodayWe made it back home from our 11 day stay in Monroe. We had , a very nice time with our family and lot's of fun and some Christmas shopping too . I only have Erwin's left to buy , everything else is DONE ! It is going to be so nice this year with not being stressed out !! We are looking forward to all the fun to come this month . Destiny & I missed Erwin very much , and we all 3 were so happy to see one another again today (we are thankful to have each other). Destiny , was very abnormally fussy the first 4 days of our stay in Monroe . On the fifth day she lost , all ability to feed herself . She could not get her arms to move to her mouth . So , I had to feed her and give her her drinks also . I cried , most of the first of the week worrying about her . By the end of the week she had gained her use of her arms , but limited to things , and depends on her tiredness to what she can lift . She seems to be ok also now -with her fussiness . We will be going the first of January for some more apt.s & some tests . We are all , ok taking it all day to day . We have so , much to be thankful for !!! She is so ANIXOUS for Christmas !!! **MANY SPECIAL PRAYERS- for Mam-maw Moore , who had a really bad fall this morning and was brought to the ER . And also for Jaylee & Jaden (who both will be leaving for Dr. apt.s and testing Monday & Tuesday) .
TodayWe have been getting ready for Christmas !! Lot's going on for us this month to come . I have finished all my Christmas , all but a few last minute things . We are leaving in the morning to go to visit , shop , and get some R&R in Monroe . Erwin , will be also leaving in the morning for a hunting trip with his buddies . We all we come back refreshed hopefully and ready for the countdown for Santa . We got some wonderful news ... all the additions to Destiny's chair has been fully approved $1000.00 worth of stuff . So , hopefully before Christmas all the stuff will be in for it . And then the wonderful news , is the Dr.'s want Destiny to be on a Pulse OX monitor and Destiny is getting one shipped to her by our SMA group . "We love you Laura" !! We hope and pray this will be a wonderful , Christmas for everyone !!! And that we all take a moment to remember the true meaning of the season .
Today"Happy Thanksgiving" !! We had a nice hoilday this year . We are so blessed that we had our little girl to share it with again this year ! We are also so thankful for all our family & friends that have been there for us this year . I am thankful for Erwin and Destiny ! Even though it is only the three of us , we have so much love and happiness !! Destiny , is helping to put up the Christmas tree tonight . She could not wait any longer to have it up . She is so precious ~
TodayDestiny , is going really well . She is battling over all the winter colds wonderfully !! We are praying for another good and healthy winter for her . We are limiting our getting out activities , hoping to keep her away for the winter germs and out of the cold . She is exicted about Thanksgiving & Christmas hoildays . As we are too , what a BLESSING to have another hoilday season with her !!!
TodayDestiny , remains to run a low grade fever but , her cough has gotten much better as of today . On Tuesday the Dr. called in a antibotic (we are taking no chances on her getting anything). Yesterday , we went to the Lung Dr. apt . Her O2 was great it was 98% . And her lungs sounded good too . We go to Baton Rouge hositpal for 2-3 days in January , for a sleep study and a PFT . The Lung Dr. also wants Destiny to have another Echo done on her heart (he has concerns with the way her chest is sunken in now) and also wants us to get an apt . to see the Scolosis Dr. again to check on her back (to have some Xrays to make her in is not conpessing on her heart or lungs) . He also changed up her Breathing treatments some . It is really cold here (finally) so , we are staying indoors and warm . We are not going to chance getting sick !!! *** A little exicting news , Destiny was in our local family magazine 2 of her photos were chosen to be in the December issue (she always seems to touch everyone's heart and let's her little light shine) !!!
TodayWell , I spoke to soon about Destiny being so well lately ! Her cough has gotten worse as of this morning , she was coughing so badly we had to get her up and take the Bi-pap off this morning and give her a Breathing Treatment . She has hacked coughing all day - so we are staying in today and missing Girl Scouts and support group tonight . If she is not better by in the morning we will go to the Dr.
TodayDestiny , has been doing really good ! She has been healthy and very happy !! For about 3 days she has had a bad cough only at the first of the morning and late a night around bed-time - dunno what the deal is , sure hope she stays well and does not get sick . We are doing treatments and medicines in hopes for kicking anything before it starts up . She goes this Wednesday to her regular lung Dr. apt . We will be sure to update on how that goes .
Today**MANY SPECIAL PRAYERS FOR OUR LITTLE FRIEND WYATT*** He has been in the hostipal since Friday , he has phemoina and really sick !
TodayDestiny , got her Flu shot yesterday . She was running a low temp. when we got to the Dr.'s office , but her Dr. went ahead with her Flu shot being it was so , important that she go ahead and get it . She did not cry (for the first time) when the nurse came in with the needle . She only cried when it was given to her . She is getting , so big ! Her arm is a little sore today but , she is zooming around happy today ! Her Dr. also changed her reflux med. to a stonger dose , instead of one pill a day she is now up to 3 pills a day . He said we will montior her on this dosage and then go from there about the sugery . He said she may require it before she gets sick again . She will not have to have a Phemoina shot this year being she had one last year and , you don't get them but every 3 years . We pray that Destiny stays well all winter !!
TodayWell , today was Destiny's scheduled Flu shot apt . But , she could not get it today . She has been running temp . since yesterday . A dry cough , sore thoart , & a stuffy nose also . She was put on antibotic and a nasal spray (that we are to add to the list of med.s she , will now use the nasal spray everyday from now on). If her cough or fever gets worse we are to go back in to get rechecked . If she imporves she will get her Flu shot this going Thursday . The Dr. is also making a call to the GI Dr. to discuss a new relux medicnie for Destiny , although we may be having the G-tube and Nissen sugery soon he said if Destiny gets sicker or sick again before the winter months . Keeping our feinger crossed that she improves before Halloween weekend , but if not we will sure have something fun at home for her to do . Please , keep her in your prayers . *Also , prayers for my little sister Amber (Destiny's Aunt) she went to the Dr. yesterday and the reports did not look like scolois but , she has 2 budging disc's . More test will be ran and probaly PT to fix it all .
TodaySpecial prayer request for my little sister Amber . She will be having a big important Doctor apt . on Wednesday .
TodayOur family had a very emotional night ... My brother flew home National Guard training (his last schooling) last night at 10 PM . We all were so , very happy to see him . He came home 4 sizes smaller , buff , and very grown up . We are very proud of him !!!
TodayThere is a little Dorothy in our house tonight !! We went and purchased the costume and new basket with the Toto pup tonight . Erwin , said she little girl was going to be Dorothy and we were going to go all out with the complete suit . (Spoil Little Diva) !! LOL ! So , the basket Mommy bought we we used for something else , useful later , LOL ! But , Daddy approved for the glitter red shoes Mommy got so , that is a good thing ! I have to say , Miss Destiny (Dororthy) looks so , darn CUTE !! And we can not wait to get to dress her up , for all the Halloween fun at the end of the month . And yes , you all have to be patient and wait on the photo's ... only a couple weeks left . (LOL) !
TodayThankfully , Destiny is starting to feel better . She no longer has a runny nose , just has a slight cough now . We got her Bi-Pap back from being repaired today (the blower had went out).
TodayFor some many times , us as adults with all our stress , worry , and busy daily lives something let all the amazing little things pass right , by us without even noticing them . I can honestly say today , was not one of those days . For today , I let all the laundry go , all the dishes set , and the floors stayed unsweeped . For today , I was a child again ... I simply enjoyed my precious little girl . We played out in the playhouse , dressed baby-dolls , read storybooks , cuddled up in bed , had cookies and tea party , and then let Destiny have bubbles and lot's of splashing in the tub . It is amazing how the simple little things bring so much laughter and happiness to her . She wears her BIG SMILE 24-7 but today it was just a little bit bigger . The best part of the day was the "I LOVE YOU MOMMY" that I kept getting today . I cherish every second of my time with Destiny and I feel so very blessed that , I have been able to be a full time stay-at-home Mommy for her . I thank God everyday for the 2 gifts he has given me , MY LITTLE GIRL and ONE MORE DAY with her !!! For every morning she wakes-up is another gift !!!
TodayDestiny woke-up this morning with a bad runny nose and not feeling 100% good . We started breathing treatments and her Dr. called in a allergy medicine , so hopefully things will get cleared up . She started running a low grade fever aroud 3 today so , keeping fingers crossed that it is just the crazy La. weather that has gotten her allergies crazy and nothing more serious to come we pray .
TodayWell we got to talk with the Sugeron and Pulmongist . Destiny , will be having the Nissen & G-tube sugery after her next PICU visit with Phemoina . The Sugeron chose not to operate till then , due to her being so well for the past year with no PICU stays . He did state that the sugery will have to be done , only time will tell how soon . If she gets sick we are to ASAP call him to get her set up to have the sugeries. Also , what held them back was the fact that her weight is get , most SMA kids are very underweight . Her tests did show a SEVERE case of reflux in a 21 hour study she had 72 spells of reflux , one lasting 12 minutes and all the others averaged at 5-6 minutes long . So , we are keeping our fingers crossed we can keep her well for as long as we can the winter will be the toughest . The Pulmongist , agreed with the Sugeron choice he said that when the sugery came Destiny would have to be vented for sure . He did a gag test , and Destiny no longer has any gag reflex , which is not good at all . He ordered us to no longer use straws if possible use easy flow sippys , being Destiny has now lost her sucking ability . We will be seeing our regular pulmongist on the 19th , to set up some testing also , to have done soon . We feel today was both good/bad news . Good in the fact we hopefully can get through the hoildays with no sugery and bad knowing that it is just awaiting game now . At least we may have been given a little time to prepare ourselves and Destiny for the sugeries . Thank you all for the support , we "will" get through this .
TodayWell , we will be heading to the Sugeron and Pumlongist apt.s in the morning . Our first apt. is with the Sugeron at 10 and then we will have a break to run and have lunch then our next apt . with be at 2 with the Pulmongist . We will be traveling to Women's and Childern's Hostipal in Lafayette . Thankful , Erwin will be going along with Destiny and I . As always he is a Super Dad and there to help Destiny through everything and always be my side ! We are very nervous , but prepared with a list of questions for the Dr.'s We will try to update Thursday night with the information we receive . We are keeping our fingers crossed that we can schedule the sugeries for the first of January . Please say a prayer for us ...
TodayDestiny , had a good weekend . Although , on Saturday night she woke-up about 11 p.m. vomoting again ! With all the medicines she is on , is still seems to have problems so , everything is pointing to the sugeries . Sure hope Thursday we will know a little more .
TodayWe thank God everyday for all the family in friends in Destiny's life . Each of you make her time with us very special and memorable . And we apprecaite all the love and support you give to her and us . And saying this , some of our dearest friends we have made over our battle with SMA has been none other than other SMA families going through the same thing as we are . Their love and support is like no other (they know first hand what we are going through and what we are facing) . Yesterday , Destiny received a package in the mail , full of girly goodies from some dear friends in our SMA support Annette and Madison Reed . The box of prizes brought a HUGE smile to my baby-girls face . She is really scared about her sugery and don't want to go to the Dr. this Thursday . And the little things like that box of prizes is what we all take for granted , as for Destiny it was Christmas in her eyes . "Thank you Annette and Madison" . We send you both a big HUG and lot's of butterfly kisses !!!
TodayYesterday , Destiny got many modications to her wheelchair . Getting things changed for more comfortable seating due to her sugery to come and many modications due to her growing . They adjusted her headrest and her rib supports . Moved her joystick and her reclincing button for easier reach for her . And we finally got her tray fitted to work on her chair . Now , they are ordering new arm rests , new reclincing foot rest (hopefully) , and a new back mount , and a swing out joystick mounting . We cleaned house and worked on scarpbooking most of the day . Destiny , got to tag-along with Mommy to go to her Fire Dept. meeting last night .Being Daddy was working on the side job . She was so good the whole time . Today , we are busy washing laundry & catching up on school lessons . Destiny , will have her first spelling test on Thursday ! I am sure she will do just fine . We got the apt. today to go dicuss the sugery with the sugeron and also met the Pulmongist that will take care of Destiny while in the Hostipal during and after sugery . We go October 6th . Little than a week away and we will know the Sugery date which is making my nervous ! I know this is something we knew would one day come and knew that it was a discussion we would one day have to make . But , it still makes it no easier !! Please keep us in your thoughts and prayers and I will be sure to update you all with all the details after the apt .
TodayAnother friend of ours , Mom . Who also lives day in day out for caring for a little child with SMA sent me this peom . It touched me as I cried it all hit home . I just wanted to share it all with you , in hopes that you will all pray for all the SMA childern , that one day we can have our cure and our wheelchair bomb-fire !! Living in My Skin: Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need conditional love and support after I am gone-this frightens me to the core. Someone I love encounters pity, stereotyping responses and prejudice at every turn, because they look, act and/or learn differently from others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything inlife long after other children are able to assume a place as part of theworld. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life... One Day I pray we have our cure for SMA for someone I love with all my heart !! "Destiny Hope"
TodayWell Rita has come and gone . Thankfully our area was not hit to hard with the bad weather . We lost power Saturday off and on . But , it came back on late Saturday evening to stay . Other than lot's of yard work with lot's of limbs down . We only had the tin on our shed come off , and a few singles from the roof of the house come up . But , nothing that can not be repaired "thankfully" ! We pray for all the other's that were affected by Rita worse than our us . Destiny , is still coughing real bad , at times she coughs so much she gets real white and can't breath . So , we are still doing lot's of med.s and treatments , vests , and using the suction machine alot . Sure hope she feels better soon . She is still up and zooming around and smiling (as always) so that is a blessing .
TodayYesterday we got our house cleaned and washed all our clothes just in case of the bad weather from Rita . ***Right before bedtime , Destiny lost her 6th tooth ! Now , she will be singing all I want for Christmas is my 2 front teeth . LOL ! She looks and sounds so cute ! She was very happy when she got up this morning to find the tooth fairy had left her the new Barbie DVD . This morning we had to go into the Dr. very early due to the office closing early . Thankfully , Erwin met me there . It was a long apt. first of all being there were so many being seen , secondly because Destiny had to have 2 treatments while there . She has an upper resp. infection , thick serctions , but no fever thankfully ! We got several more medicines . And we had the G-Tube and Nissen sugery discussed . Destiny , we will having both soon as we can get an apt. I am to call the sugeron next week at the latest . Both Erwin and I had our good long cry , then when I got home I talked to Destiny about it all . She seems ok about it , I am going to try and make the next few days or weeks before her sugeries the best I can . To keep her mind off of it all !Mommy & Daddy are hanging in there , we are grateful for the love and support of family and friends . We will be sure to update everyone as we get the apt. date and sugery date . As for today , we are keeping our news on and staying informed about Rita . We are prepared and just pray that everyone is safe with their loved ones !
TodayWell , Destiny is still sick although she has had no more fever , thank goodness about that ! She slept most of the day yesterday due to being wore out from all the coughing and too the medicine makes her dizzy & sleepy . I have been on the phone all morning , getting new tubes Fed-X to us for her vest . And getting apt.s lined up . We go in on Friday evening to the Dr. to check Destiny's lungs & O2 levels . Then we go in October to see the Pulmongist to set up the Lung testing we missed this spring .
TodayWell , guess we spoke to soon . Destiny , is back sick with a bad cough this time . Sunday , night she woke-up with fever and barely able to talk . So , Monday the Dr. called in some new medicine to try with her . Which she hates the taste , of it so we have a battle 4 times a day getting it down her . Along with around the clock breathing treatments and vest we all are real tired . We are to go in Friday if she is no better so , they can do some lung X-rays to make sure she is not setting up anything . Hopefully , the Little Princess we feel better though . We have her Hostipal Free Party planned for Saturday and it will break her heart if we can not have it . So , please keep the prayers going for Destiny to get completley well soon !! *Special Prayers for our friend Jaden today , he is having a sugery today .
TodayWell thankfully , Destiny's fever is gone . She does have a stuffy nose but , no cough or runny nose . So , we are still making sure to give her allergy med.s and breathing treatments daily to hopefully kick it before it gets any worse . She is make to feeling her old-self happy & spunky over the weekend . So , keeping fingers crossed that all will stay well for her . We had a nice relaxing weekend , and getting ready for a busy week ahead .
TodayDestiny , still has ran a fever today . She is real tired , but seems to be in a better mood today . We will go in to the Dr. Friday if she runs fever again tonight . If not , than hopefully it is these teeth giving her troubles . So , keep your fingers crossed for us that she is not getting sick !
TodayPlease prayer for Destiny , she had a real good day today . But , this evening she started running fever . She is already sound asleep for the night which is not like her . I hope she is fully better in the morning . I am keeping my fingers crossed the fever is from her cutting all those new teeth .
Today****DESTINY SLEPT IN HER OWN BED IN HER ROOM FOR THE VERY FIRST TIME LAST NIGHT**** !!!! For the last several months Destiny has been asking to sleep in her own bedroom . But , both Mommy & Daddy would not come to terms with the fact that our little girl is getting bigger and is wanting to do all these big girl things . We have all slept in the same bed together since she was born . But , last night we hooked up the montiors and let her give it a try . She did WONDERFUL !! Usually she wakes up at least 6 times to have us roll her over but last night she woke up once to be turned . And she woke up this morning very rested and not tired at all , like most mornings . Mommy & Daddy will have to get used to the fact of no , little one in between us at night . But , I really think it is good that she is in her own bed , and resting better . So , now she has placed an order to go to town this week and get a bedside lamp , a clock , & a new pillow case . (LOL) ! We will also be getting her some blinds for her room and a ceiling fan . We also got a rental Bi-Pap machine to use while the vender gets Destiny's fixed or replaced . (Thank Goodness for that) ! On a much more serious note we heard from the Sugeron today . He read the reports from Destiny's tests last month and feels she needs both the G-Tube & the Nissen . What a blow , to us . We had our fingers crossed that things would not come to that . So , we will be going to see Destiny's specialist within the next couple weeks and discussing with them everything . We want to know all the good facts and bad facts for both of these sugeries . This is a MAJOR DEAL and we are so , scared ! So , please keep us in your prayers . Other than that Destiny is doing great ! And is doing so good with her homeschool lessons . She is getting to be such a smarty !
TodayDestiny , had a rough night Saturday night . Her was having lot's of pain again with her tummy . After , giving her 2 of your pills she was better enough to go to sleep . Boy baby finally peacefully slept at mid-night . Hope to get to talk to the sugeron in the morning . Also , the Bi-Pap went out !! So , the dealer will have to come out first thing Monday and get it fixed . We can't go another night with out it , tonight will surley be scary for us without it . But , we do have some good news also to report on . Destiny , beautiful little face will be on a STAMP starting this month !!!! WOW , huh !! It is really pretty and we will sure be buying lot's of the stamps for all our letters . You have to order them online they can not be picked up at the local post office , so everyone be watching your mailboxes for a letter with our angels picture on it !!! LOL !
TodayWe are home ... And boy have we got lot's to update about! First of all the 2005 MDA telethon went great! We really enjoyed visiting all our MDA families. The whole 2 days were very emotional for us, again this year our family was chosen for the live interview, which was hard for us to find all the words to talk about our angel-baby. Destiny, appeared in TV Sunday night and spoke for the first year !! Wow, Huh! We were shocked and so proud! I think this year is the first time she really understands something's about her having SMA. Monday, along with the interview she made many shots of the telethon and also she made the local Monroe news on Monday night. YIPPEE! Hopefully, by always spreading the awareness of her DX we will one day have a cure, and maybe be able to help others along the way too. *Thanks to all our MDA heroes (you know who you all are) the gifts for our family and Destiny were wonderful! And big thanks to all those who tuned in to watch Destiny on TV and all those wonderful people who donated to Jerry's Kids! Tuesday-Friday we enjoyed family time with our loved ones in Monroe, went out to eat, and did a little shopping. Although, we hated to leave, we really enjoyed getting home back to Erwin we had really missed him this week. Destiny, tooth is so lose now, she don't want to pull it yet for some reason! LOL! Hopefully, it will fall out soon it is really looking gross hanging there. LOL! We heard from my little brother yesterday on the cell, boy was Destiny and I so happy to hear from him. He is well and will fly home for a few days in October before he leaves off again.* Many thoughts and prayers to him ! *Also, many prayers to our friend Ronnie (who is Erwin's real good friend and coworker) he got hurt at work. We pray that he is back on his feet soon! *Special thanks to our friend Charlene for Destiny's package (she loves the PJ's) ! *And another special thanks to our friend Charottle and Dennis for Destiny's package (she loved all the things, the most the princess wand ) ! **Exciting news to tell ... Destiny's story was aired on the Delilah show, and Delilah sent Destiny a package with a CD and a signed photo of herself for Destiny. It was awesome !! **We also received our copy of the SMA faces, Power Point CD! I cried thru it all, it is wonderful. Destiny, enjoyed seeing all her friends faces. She said Mommy, we all have SMA the same, I said yea baby you all do. She saw the ones with angels beside them and said, but Mommy there are so many SMA friends that are angels and I know they are watching over us . (what amazing hope & faith God has put into one little 6 year old little girl) I am so thankful that, that little girl is mine !!! Hope the next entry will not be so long (sorry) ! But, we just wanted to share all the exciting news with everyone & it is always up lifting to be able to have good news !!! Blessing to everyone and remember Sunday is grandparents day !! So, happy Grandparents day to all the beloved grandparents out there ...
TodayWe are headed to Monroe for the MDA telethon tonight and all day Monday . We are looking forward to a great Labor Day weekend . We will be staying a week with my grandmother after the telethon , so we will be sure to update when we get back in town . Hope everyone has a good Labor Day ! **Watch for Destiny on TV , she will be on Monroe local channel 8 ! And remember to donate for Jerry's Kids , we hope to have our cure one day for our little angel !!! **HAPPY LABOR DAY !!
TodayToday , Destiny master Phonics in lessons . She now is sounding out the sounds that the letters make . And starting to really read ! She read a few pages from a step one story book today . (Mommy's little baby-girl is getting to be a big-girl) We babysat Madsion today , Destiny was a big help as always . Although , when Mattie got tired and fussy Destiny said ok Mommy she is on my nerves ! (LOL) My auxiarly group all got signed up with the Red Cross , we will be doing these to help the people that have came to our area because of the Hurriance . And we also will be helping out for the flight of soilders coming into see their families in Sept. It feels good , to help others (even though my own little family is going through alot) . I think , I should give back as much as I can to others too. Destiny , is asking lot's of questions about the hurriance she watches the news and was getting real sad . So, tonight we took her to see the some of the families that have been affected , and for her to see they are ok , just really going through alot ! It helped her to see it all , she is ok with things now and not so sad . We are planning to get somethings gathered up to take to some of the childern , on Friday . Prayers are with everyone that has been affected by this devasting time . My heart truly goes out to all ... **Thinking of you Dixie , I can not imagine what you are going through (be watching for a package in the mail at your parnets house) we will be sending you a care package too !! We love you and we are praying for you !!!
TodayIt sure has been a very busy day here for us . We started homeschool for the first day this year (today) . Destiny , did really well ! We started at 10 and when we were finished it was 1 . We worked right through lunch without even knowing it ! (LOL) Destiny , is really into school this year and likes to learn things . So , hopefully she will do real well . This evening , at 5 I went to a homeschool group meeting CCHSA . And the at 6:30 had my fire auxilary meeting . Between school , hunting , auxilary , girl scouts , & fun will we sure to have busy schedule for the fall & winter . Destiny , is doing well we are thankful for that . We still are awaiting the date to see the sugeron . Hope to hear from them this week sometime .
TodayWe are so thankful we did not get any side effects from the hurriance our way . Other than some bad wind , and our power be out for about 2 hours . We send out prayers to all the families affected by todays , storms . *A special thanks to our friend Ms. Charlotte Leach (Destiny got her card today) , she was very happy !
TodayMany prayers to all of our friends/family that may , affected by the hurriance . Special prayers for my cousion we lives in New Orleans , but now is in Lafayette safe .
TodayDestiny , got to attend the MDA McCartney Oil Fishing Torunment ! Her Daddy and his friend also fished in the event . We all had a really nice day , and the event raised lot's of money (hopefully one day we all will have our cure) !!
Today***Destiny , lost her fifth tooth today*** !!! Destiny , lost her first top tooth , today . Which made her 5th one total to lose . While brushing her teeth it started to bleed really bad , so I checked it and it had to be pulled . It came right out ! It bleed really bad for several minutes , Destiny got shaky and turned white ! She had a panic attack !! Which scared Mommy to death . She soon settled down after I got a cold rag and stop the bleedind , then I gave her two puffs for her inhaler . Which helped her settle her breathing pattern down . Now , she is smiling and happy that the tooth fairy is get again paying our house a visit . (We had told her along time ago that her front teeth are real special and she will look so cute and talk different without them & that the the tooth fairy brings big gifts for those teeth) So , boy is she anxious to see what the tooth fairy brings her !! So , 5 teeth now gone & one top tooth loose still .
Today**Many special prayers today for our Haley**! She is traveling to Tulane hostipal in New Orleans for some testing . Please keep them in your thoughts .
TodayWe heard from the GI specialist again , today . They have got all the reports to , the sugeron for him to review it and then they are going to call us with the apt. to go back to talk with the sugeron . They still would not give us , any details about all the tests . Which makes , nervous ! No , news is good news , but it only leaves the mind to wonder and worry . Just keeping our fingers crossed and praying things will be ok . I am thankful that the GI Dr. keeps us update with what is going on , though I hope we soon know if sugery will happen or not . I think the unknown is what is so hard . Just going to take one day at a time ...
TodayDestiny's , medical alert bracelt came in . It is so , pretty ! We had it made with sterling silver and crystal pink and purle beading . With a Princess Tiara charm . Then it has the standard medical alert sign and badge . That has her Full name , DX , that is uses a chair ,and everything that she is allergic to . It is really nice and worth the money we paid for it ! We pray that it has to never be used , but Destiny will wear it 24-7 and not take it off to make sure things are known in case of an emerency . We will be lighting our candles tonight (for the annual SMA awareness , candle lighting ceremony), and saying our special prayer for Destiny and all our SMA friends that one day we will have our cure , and a special blessing to all the SMA families and their angels that lost their battle and are in heaven now .
TodayWe got the call with the results , from all the testing Destiny had on the 15th . The GI specialist is sending us back to discuss everything with the Sugeron . They are suppose the set up that apt. date and call us soon as it is set . I am no the , edge about it all . Worried sick , not knowing what to expect ! Please ,keep us in your thoughts and prayers !! And I will be sure to update as I know everything . **Happy Birthday to my Mom and Destiny's Maw-Maw . We love you lot's and hope you have a good one !!
TodayWell the tooth fairy has come and gone again ! Leaving , Destiny with lot's of goodies as always . We have been really busy today , getting ready for our big Yard Sale we will have at our house Friday & Saturday . And Destiny is having her own little cookie sale on Saturday , so everyone come buy some yummy cookies !! I have been really busy myself trying to get the our end of August plans and September plans squared away . We will start Home Study in Sept. and also be taking a vacation with Destiny and Wyatt . Which Destiny is very anxious about ! Tonight , I had our community's monthly Fire-Women Auxillary meeting . And I was voted the Secretary . It was fun to get out with the ladies and laugh . We are planning a lot's of fun things for the community and childern to do . Destiny , got to stay home with her Daddy and she enjoyed that (Daddys-little Girl) . She was as always the talk of the evening with the ladies , she was picked to be the Poster child for our Fire Dept . YIPEE !!! Hope everyone has had a nice week . We will be sure to update about our sale . Hope to see some of you there !!!
Today***Another tooth gone*** ! Destiny , woke up this morning and I checked her teeth being she had 3 loose one on bottom and 2 front teeth . And there was no bottom tooth ! I don't know if she lost it when they tubed her on Monday or she lost it in her sleep and swollowed it ? But , she has now lost her 4th tooth !! She was upset , and cried that the tooth fairy would not come we would write her a letter and place it under her pillow tonight ! We are patiently awaiting the lose of her 2 fromt teeth now !
TodayWe are home ! Destiny's testing went great ! We arrived at the hostipal at 8:30 Monday morning . Destiny , was then admitted and took to her room . Where a team for Dr.s & Nurses came in to speak with us about her testing , illness , her being put to sleep . Destiny , sat in the bed very quiet , but cheerful . Although, I could tell she was real nervous ! As were we all . When the sent her back to be put to sleep , it broke my heart . She cried for Mommy ! And I lost it , I could hear my baby calling for me and I could not be there to hold her hand . She was asleep from 11-12:30 then in recovery where she had to have x-rays done . During the scoping they also did a stomach biospy , and place the Ph Phobe tubing in her nose along with an IV for fluids . When she came out of recovery and saw us for the first time she was still very out of it , but from under the covers she reached out her little hand for mine and said we made it Mommy to me . The specialist and the GI Dr. came to talk to us and said she did great , she had a little bleeding on her mouth from the tubes that where down her thoart and when she got back to her room she started vomoting blood . But , soon went back to sleep for the most of Monday . When she woke she felt ok , till the nurse had to come and place the nose tubing further down . Which was very uncomfortable for her . That night she got to have her IV out and start eating . This morning soon , as she woke we got to take the tubing out and go home ! "Thankfully" ! We truly believe that Destiny had her Angels with her during it all . We are so , blessed that things went so great ! We will get the Ph Phobe study results along with the Muscle Bio . results in about a week . We are praying that things look ok , we are just taking things one day at a time now . Thank you all for praying for us ! Thank you Kim , Kelsie , Chantel and Stefanie( for being that phone call away for us) ! Thank you Denise , Heidi, and Shonya for always being there for us . Thank you to my family in Monore , I am so thankfully for my Dad , Step-Mom & Grandmother . Thank you "MOM" for being there on Monday for Erwin , Destiny and I . (lot's of love to ya) Thank you to my Step-Dad , for loving us and Destiny . And to all our SMA friends that gave me advice and support . And thanks to GOD above ! *And most of all for Destiny , our angel - baby ! You were so big and brave . We hope you will not have to go through this again !! We now hope we can just enjoy the next week and we will deal with whatever the results come back as , then . With the support & love of all of you our jorney with our angel-baby will be much easier as long as we have you all in it . Let's all be thankful for each day we have been blessed with !!!
TodayThis will be the last update before we leave early in the morning ! We want to ask everyone to please keep Destiny and Erwin & I in yur thoughts and prayers that everything goes smoothly ! I also want to thank all of you that have called , emailed , and came to spend sometime with Desitny , this week . Your love and support mean alot to us . All of you that have our cell #'s feel free to call us . As we will surely be to nuts to call anyone ! **Keep the prayers going***!!!
TodayWell , the site is finally back up and running YIPEE to that ! I will try my best to fill everyone in as best I can . So , I will try and back track ... First of all Happy late Birthday to my little brother who is away at training for the Army . July 29th was his Bday . On Aug. 3 , Destiny went to see the second GI specialist . And he wants Destiny to for sure have the Ph Phobe Study along with the scope . So , we go this coming Monday to Laf. Womens and Childerns at 9 , and at 11 am Destiny will be put to sleep for it . She will then have to stay at least 24 hours for the study . We are very , very nervous about Destiny being put to sleep but this test will tell us for sure if she has to have the nissen and G-tube done . Please , pray for us !! Other than that , things are great ! Destiny , is getting ready for home study in September . Big 1st grader (Mommy's baby is growing up)! Her playhouse is done and she plays in it , non-stop ! Destiny , is getting ready to start beauty pageants again . So , she is really anixous about that . We have lots of things planned for the rest of August and the month of September is full already . So , we are keeping busy and trying to keep our mind off things . Oh , and Destiny lost her 3rd tooth this week ! I want to thank all our friends and family that have called and came to see her before Monday . It means so , much to us ! I will be sure to update again now regularly so make sure to come again and see what is new with the Princess . And make sure to sign her guest book ...
TodayGuess , recieved another Summer Reading Program award today . She has now made it to reading 78 books . She has till August 6th to make her goal of 100 . I am sure , we will read the few left to read this week knowing her . LOL ! She was so happy to get her award , and I am so very proud of her !! We went and got a air unit (with remote) for her playhouse this evening . She is for sure a Princess in a Castle now , it is looking so pretty !
TodayWell , Destiny is doing ok today . She started out the morning very tired and still not feeling to good . So , I gave her another dose of her med.s , and my noon she was feeling better and alot more cheerful . So , that was a blessing ! *Please prayer for a speedy recovery for our friend little Grace who also has SMA and had her Nissen and G-tube sugery today . Kelly , we are here if you need to vent , cry , scream , or chat . Prayers and lots of love to you guys .
TodayWhew , boy is our bunch tired ! We had a work filled weekend . Saturday , evening Destiny got to spend the night with her Ma-Maw . She was so happy to see her Ma-maw & Pa-paw . Late the evening Erwin ang I got the outside of the playhouse painted , then went out to eat and went and rented some scary movies that we don't get to watch with Des. home . Today , I got up early and went and picked up Des. and my sister Kim and Haley we went shopping and then came home to paint the inside of the playhouse . It looks so , good so far ! We cooked out today for Kim's Bday ! "Happy Bday" !! Then tonight we tired to get to bed early , we all were so tired . But , soon as Destiny's head hit the pillow she started her vomoting . Poor baby , turn white as a ghost . She is sleeping peacefully now , Mommy is now up watching over her baby-girl and worried . August 3rd can not come soon enough , we need to know what we have to do to help our angel . We have a busy week planned so make sure to chekc back with us later for more updates !
TodayWe made it home yesterday evening from our week long trip to Monroe to visit with family . We had a nice week and it was so great to get away for a few days . While there we got to go see my Aunt Tami and my Great Great Aunt Nellie . And we went shopping also . Destiny , enjoyed her time with family so much that she cried when we had to leave . Now , that she is back home with Daddy she is happy to be back . We have a real busy weekend , trying to finish up the Princess's playhouse . We hope everyone had a great week and will have a wonderful weekend ahead . *Please keep our little Haley (Destiny's cousion in your prayers , she will be having testing done on August 25th !
TodayWell , hopefully our luck will soon get better . After , all long stressful week with Destiny's GI apt.'s . Erwin , had to go into the Eye specialist on Friday morning . On Monday at work a piece of wood went in his eye . By Friday , he could not see out of it , it was blood red , and he was in alot of pain . The Eye Dr. said he has a severe eye infection . When people have eye infections they usually have a ucler in their eye , at the most 2 uclers . He had 9 ! They numbed is eye , he is on eye drop med.s every hour and med.'s by mouth everyday for 5 days . So , he had to be home all day Friday , and Destiny & I did the best to take care of him . Saturday , we sat around the house just relaxing and watching TV . Erwin's , eye is now alot better already (thankfully) . Destiny , is well and full of energy , she has kept me on my toes this weekend ! We are headed out this evening to go to Monroe for a week to spend time with family . (A much needed get away) We will be sure to update soon as we get back in town . Hope everyone has a good week .
TodayWell , it has been a very /very hetic and stressful past 2 days . On Wednesday , Destiny and I had tons of errands to get done and lots of medcial stuff to pick up for today's apt . with the sugeron . We was able to go to the libary to get her newest award , for reading more books (she is working very hard towards her goal) , she is so proud of herself ! Then Wednesday evening we went and saw baby Joseph for the first time , he is just precious . Destiny , loved on him and gave him she bottle . Then she got to stay the night with Ma-Maw . Erwin & I went to the ER with Stef and Theron (we are saying a prayer that your arm heals fast) . This I got up early and headed back to the hostipal to visit with little Katylin and her Mommy (Katylin we are so happy you are home now , and Princess you are getting so big and you are a cutie pie) . Then a ran and picked up Des. and got home and got Erwin and we headed off on our trip to the apt . today . The sugeron was very nice and very kind in explaining everything to us , including taking time to answers all our questions . We feel somewhat better , but still nervous . We will be going back to see another Pedi GI specialist that works hand in hand with the sugeron , and the new Pedi GI will be putting her in the hostipal out of town for a couple of days . The will have to put Destiyn to sleep and perform a PH Phobe Study on her , then after those tests are done , we will go back to the sugeron and he will then say if we are going to perform the nissen & the G-tube . Going by her Upper GI and swallow study (things have progressed and muscles are no longer working the best) so , this test will give him the 100% answers about the sugery . "Please keep the prayers going" !!! We will be going to met with the new Pedi GI on Aug . 3rd and then the PH Phobe Study will be scheduled for us . So , not sure yet to when that will be , lots to pray about and keep me a worring till then . We are scared to death , about putting her under for the study but we will make it through all this because of our great support system we have ! **Thank everyone for all the on going prayers for our family , it means so much ! You truly learn who loves and cares about you when a time like this hits . We are so thankful Destiny is so loved !!! ***Thank you MJ & Brenda (BSMA Inc.) Destiny recieved her blanket , doll and 2 TY animals in the mail on Wednesday . She was so happy and so proud ! And what was so , neat is her blanket of it honor of you "Lindsey" ! Destiny , thought that was special . And guess what MJ , Destiny named the doll "MJ" !
TodayWe got the call from the GI Dr. today ... We will be headed out of town on Thursday to see the Pedi GI Sugeron . News , we did not want to hear today . Both Erwin and I are in a bit of shock . All I could do this evening was cry and hold Destiny and PRAY ! We need the love , prayers , & support from all our family & friends more now than ever ! Destiny , was sick all night last night , we did not get any sleep . So , we took the day to lay around and rest . I have lots of errands to go and get done to prepare for Thursday . I want to let everyone know how much all the prayers , caring concerns , call , emails and cards have meant to us . Most of all just please keep the prayers coming for our little girl . *Thank you Joshua for Destiny card , she got it today . She misses you already from ball and we will be seeing you real soon . *Please , say a prayer for our little friend Katyiln she is sick too .
TodayWell the little patient's knee is improving lots . I finely out Destiny in her chair today , she has not complained much at all with her knee today . It now , only seems to hurt when she gets transfered in & out of her chair . The Princess now , has lights in her house ! Erwin , worked all evening getting the line ran , buried and lights on in the playhouse . She went in the playhouse my her ramp for the first time today , she giggled all the way up & down . She is so happy ! Not alot more to go till , we can paint and post photo's for everyone . And of course have our first tea-party ! (LOL) We want to say a BIG thank you to Ms. Denise for the package that you sent to Destiny . She got it today in the mail . She was so surprized and smiley !! You are to sweet , and we love ya ! Still no news from the GI Dr. , we are waiting on pins & needles for the call . Keep us in your prayers and we will update soon as we get some news ...
Today***HAPPY BIRTHDAY TO MAM-MAW MOORE*** We love you lots and we will be seeing you real soon ! Destiny , had an okay weekend . We didn't get her out much just stayed home to let her knee get well . She still has some pain , mostly at night time . I did get her in the pool today , I think it helped her to get in , she was able to move it around some with out it hurting so much . Erwin , did more work to the playhouse (it is looking so great) he really has put in alot of time and love to the project , it has to be perfect for his baby-girl . He got the door built today , the water ran , and the ramp built . Not much left to go now ! We have Haley staying the night , so I will be on my toes !!(LOL) They girls are having fun playing though. I have a full week of plans ahead for Destiny and I . So , check back with us later to see what we are up to . Hope everyone has had a wonderul weekend and has an even better week ahead ! Blessing and thanks for all those who are praying for our little girl . We will be sure to let you all know soon , as we get the report for the GI Dr.
TodayWell , yesterday was full of emotional ups & downs . So , just now getting a chance to sit down and update . Yesterday , we had to get up early and go off and get the Swallow Study and UGI performed . It usually only takes a few mintues for these tests , Destiny's took 2 hours ! Her Swallow Study showed that her delayed swallowing , is no longer delayed (it is not working at all now) . No , closing it just stays open . The UGI did not go well at all , have taking the first glass then 4 sips of the next Destiny , started vomoting . They said that she is refluxing everything that goes down , right back up . The UGI test tech said that looks in her opinion Destiny will be needing the nissen & g-tube sugery . (We have our prayers going ) We are scared to death !! And just awaiting the call from the GI specialist , soon as he gets the reports he should be calling us . We tired to sit Destiny down and talk with her she has been asking lots of questions about her tummy . She over hears everything , so we are being open and honest about the chance of sugery . She is handling knowing about things better than she does not knowing . Ma-Maw & Pa-Paw went with us to have the testing (being Daddy needed to work , he was off both Monday & Tuesday) . I am glad they were there , with us . It helped Destiny and I both . After , we left we took Destiny to eat a big breakfast , it was almost lunch time but she wanted pancakes ! (LOL) When we finally made it back home , Destiny and I laid down for a afternoon nap . Last night , she had her Ball Awards night , it went so wonferful !! They had it a a very nice place in Alex . the Alex firemen & Am . Vets were all there to sponser it . They also had the Balloon man there . They cooked hambugers for us all . And they had a huge baseball cake made for the kids . Destiny , enjoyed being with all her specail friends , dancing to the juke-box and getting lots of balloons made . Channel 5 was also there , Destiny got more TV time , when they called her name is zoomed up there with a HUGE smile on her face for the camera man . She got a trophy and a medal . She was so , proud ! Both , Erwin & I teared up . We are so , proud of her . It was nice to have a bit of happiness in our worried and rough day . At the end of the ceremony , Destiny got her leg hurt by her chair (her lower knee got twisted) . She was hurting so bad , she was crying and her tremors started . We were about to leave , when she stop breathing and fell backwards in my arms . It scared everyone ! We think , between the pain of her knee and getting overly hot her O2 fell . After , getting her loaded ready for home with the air on max on her she soon got her color back and was feeling better . I gave her some breathing treatments soon , as we got home , some mortin for the pain , and got her on her Bi-Pap . She sleep so good ! And woke-up with just a little hurting aroung her knee . She is in a good mood and shows no signs of anything wrong . "Thankfully"!! We have to go in to town and met Erwin this evening , to get some business papers signed then we plan to come home and take it easy tonight watching some movies . It has been a hetic week for us all . We will be sure to give all the details , soon as the GI Dr. calls .
TodayWe made it home from the Dr. apt . with the Pedi GI specailist out of town . The apt . went well , Destiny loved the Dr. his staff kept going on about how pretty and cute Destiny was which lighted the time there for Destiny . They were all so , kind ! The Dr. seemed very knowledge about SMA and what precautions to take with Destiny . He went over everything with us , which in all was a relief but there is alot for us to think about also . We will be going to have Destiny's second swallow study and her first upper GI on Thursday morning , after the specialist gets those results we will then know what will be the next steps we have to take for Destiny . He did say , she may have to have a thoart biopasy , G-tube & a nisson performed . (All of it depends on the test results) . We have hope that it is not time for any of these , being if it is we will have to go to out of town , to have the sugeries with a full Pedi staff (which our town does not have) . Please , keep the prayers coming and we will be sure to update Thursday after her tests .
TodayHAPPY 4TH TO EVERYONE ! Many prayers for our soilders and those without there loved ones today . Our 4th went nice , Destiny loved every minute of the fireworks , we did for her tonight . She giggled the whole time . Daddy , went over board with the fireworks , so we popped them for about an hour and 1/2 and we still have some left . (LOL) We are ready to bed , to try and get some rest for the Dr. apt . in the morning . Please , keep Destiny in your prayers . We are very scared and pray for good news ...
TodayWell , we are having a good fourth of July weekend . Lot's of laughing and family time ! Destiny , is enjoying the hoilday . She had a full red, white and blue outfit on today and plans to dress all up again for Monday . She is something else ! (LOL) Friday , night she had a bad night . She woke-up about 11 p.m. gasping for air (with the Bi-Pap on) , started gagging , and getting choked . We got the Bi-pap off and I sat her up and rocked her , she then got a pretty strong case of her tremors . We pray we can find out on Tuesday what is going on , with these night spells . Other than that is doing wonderful . Is has begun to pick up a little more energy . And is in very happy spirits . She got to stay the night with her Ma-Maw and Pa-Paw last night . Mommy and Daddy missed her like crazy , but it was nice to get have a grown up night too . We went over and visited with our neighbors and had a few drinks to relax then we had company over to watch a scary movie and have a few more drinks . We had a good night . But , Erwin and I both got up and dressed early this morning to go get our baby-girl , one night without her is plenty !! We hope everyone has a nice 4th ! We plan to have a nice one too . *We are thinking and praying for you Rusty , we miss you . Wish you were home to celebrate with us !
TodayWe have made it home from the Dr. apt . Destiny , fought me this morning having to get up so early . She just seems to be so tired ! The Dr. did a few tests on her today . Including a Urine test , she had to have 2 done . The first one did not come back the way they wanted it to . So , we will know the results of the second sometime today . Second thing she had to get a shot in her left arm . Boy , was she ticked !! She cried more before the shot than afterwards . She also got weighed she is a big 60 lb.s now . The Dr. is concern about her weight again , being she gained several pounds within the last month . He is afraid she is not burnign off , her foods like she should . And the most serious thing is she is being sent to a GI specailist on Tuesday July 5th . We will leave on Monday night and get a motel probaly so , we do not have to get up and travel so early on Tuesday being it is an out of apt. We are a little nervous about things coming to this point , we pray we will get good news and not have to be tubed yet . Please , keep us in your thoughts and prayers . We plan to stay home the rest of the week , so I can let Destiny rest . So , hopefully she will be up to having lots of fun on our Full planned out Fourth of July weekend !!
TodayWell , Destiny had another very tired day . She goes to bed by 8:30 and this morning she did not wake up till about noon (which is not at all like her) . By 2 she was tired and weak again . I am worried about her . I hate to think she is progressing . We have early apt. in the morning with her Dr. hopefully it will go well . Please keep our little angel girl in your prayers !!
TodayWell , the weekend has come and gone . We had a nice relaxing one and I finally got alot of I guess , you would call it Summer cleaning done . Trying to get ready for a big yard sale soon . We just have to much !! Erwin , worked on the playhouse it is looking so adorable . I have been busy getting organized , the next couple of months are booked with some really important Dr. apt.s and some traveling for them . We pray that they all go smooth with good news ! Our first one is Wednesday at her primary Dr. a regular O2 check up and to discuss her Swallow Study apt . date . We will be sure to update with all the details on that apt. We are staying home most of the day today . Destiny , woke up really late . She seems very tired lately and has not been sleeping good at night . But , all in all she has been well which is a blessing .
TodayWe have made it back home !! We got in yesterday evening . Destiny , cried and said I want to stay 18 more days (LOL) . The house beside my grandmother is for sale , which gave Destiny lots of ideas . (LOL) We had a really nice relaxing weekend . It was nice to get away . Although , we missed Erwin lots !! We just got something to eat and stayed home last night watching movies and enjoying being back home with Erwin . We all had really missed each other and enjoyed cuddling and just being back together . Destiny , is doing ok . She had a pretty good week . Although , she was very weak and tired the most of it . She was very floppy and we kept her chair in recline for the most part . She had trouble with her neck control and upper body . We go into the Dr. this week . Hopefully , they have found somewhere to have her Swallow Study , being the ones here are not experienced with SMA . Wish us luck ! We are not to sure as of to what yet we will be doing over the week , but I am sure there will be something to update about ! So , make sure to check back with us later ...
Today***HAPPY DADDY DAY TO THE MOST AWESOME DADDY ON THE EARTH*** Erwin , you have ever once given up on Destiny . You are always there when she needs you sitting long hours in hostipals , never missing dr.s apts with us , being such a wonderful spokesman for MDA and most of all being my rock !! As for loving Destiny you do and it shows each time you look at her and talk about her . She is surley Daddys little girl . You always find the time to play with her , hold her , help her , and trying to give her the world . Both Destiny & I are so very proud of you !! We will love you forever !! I hope you loved your fathers day gifts and had a good day today . Most of all , I know you are so thankful for your little girl . Yesterday , was a great time on the Girl Scout trip . Destiny , had so much fun ! Her bear that she made is PINK (who would have thought)LOL ! It's clothing she picked is a pink ballerina suit with matching bows , shoes and purse and a backpack . Guess the bear needed it's asscerioes too .LOL! She named her Rainbow . Today , we have spent lots of time with family and Erwin we had a BBQ and swam today . We will be leaving in the morning to go for a week to Monore to visit with family . Kim and Haley are coming along with us for the week . We hope to have lots of fun !! This will be our last post till when we get back in town . So , hope everyone has a good week . * We hope everyone Daddy & Grandfather had a wonderful father's day today !
TodayWe got our wheelchair lift for the vechile today . How thankful I am for it !! It will make laoding & unloading the chair so much more easier . We are resting up & relaxing this evening , we will be going to Baton Rouge to the Mall of Louisiana for a Girl Scout trip . We are taking the troop to eat and to Build a Bear workshop . Destiny , is very exicted about the trip . We hope everyone has a great Friday evening and a wonderful Saturday too . We will be sure to update about the trip , so check back to hear all the details ...
TodayDestiny , asked the cutest question today . We were driving by Proctor & Gamble . She asked "Mommy , is that where they make clouds" ? Both Erwin and I looked at each other and laughed then tired to explain where and how clouds are made and what they actually make a P&G . These are the memories that last a lifetime ...
TodayWow , where has the week went . Here it is already Wednesday ! Yesterday , Destiny got to go over and spend the day with her Ma-Maw & Pa-Paw . I went to town and got all my errands done and bills paid . And had a nice afternoon getting to lay out in the pool . Which was nice , (Mommy needed a break) ! Then Erwin & I went to eat dinner and get good night loves , we go have a had time being so far away from her now that Ma-Maw & Pa-paw don't live next door. Today , Destiny enjoyed getting to play with Haley while Mommy went and did some shopping , and went and had a make-up makeover and facial . Which was so nice , I may add !! Mommy , got all new make-up and a new hairstyle . Which Daddy was very happy about ! And Destiny was to , cause she got all of Mommy's old make-up to play with . (LOL) Well , when I went to get Destiny today , Haley cried to come along with us . So , 2 rotten rugrats to entertain tonight ! **Also , I picked up Destiny's pictures today , the proof did not do justice for them (they are AMAZING) ! **News , on the playhouse it is coming up wonderfully , Daddy needs about one full weekend to paint and hang the ceiling fan and then it will be time to decorate !
TodayTink (Destiny's Guinea Pig died) sometime last night or early morning . I found her this morning in her cage already passed away when I went to go give her fresh water and food . Pet Smart and the Vet said Guinea Pig have respitory problems alot and she must have been sick without us knowing about it . I was scared to tell Destiny , not knowing how to explain it to her . But , I got the courage up and went and told her , loved on her and let her tell Tink by . She handled it better than I thought she would . We will bury Tink this evening. And I promised Des. we will go this week , to get her another one .
TodayWe got a BIG surprize this evening ... Trooper Hilton came by and deleivered Destiny the La. State Trooper magazine . It is an annual magazine . And this year Destiny's art work is on the cover and her story along with a family picture with the troopers is in the magazine . Trooper Hilton even had Destiny autograph his copy . She giggle , and thought that was real neat . We made sure to print him out a couple of her Disney pictures before he left . Destiny , will be attending the State Trooper golf torument this July .
TodayThanks , for all the prayers for my sister . She is now home from the hostipal . It will be a long recovery both physically and mentally for her . But , she is home getting lots of loving from her sweet baby girl . Which is making things a little better . We have had a good but busy past two days . On Friday night we brought Haley to be with her Mommy & Daddy . She was not to happy about that , but soon got settled back at home . Then Erwin , Destiny and I went to do some shopping , we had to get some new tires so while waiting on them to be done we did some shopping . Then we went out to eat . Our big exictment for Friday was getting a sprang right ankle . It is really swollown today , but it has not slowed me down any .(yet , LOL) Today , I got up and went to Targert to get lots of organizing baskets and boxes to redo Destiny's closet , mostly for all her million of barbies . Destiny and Erwin stayed home and sleep in . When I got back we headed up to the churchto undecorte from VBS . Then we went to get a bite to eat and came home and relaxed and swam all evening . Destiny , was so tired from being so busy all week and then a full day in the sun , she fell asleep soon as I laid her down for a rest , she still is sleeping 3 hours later ! Baby -girl was tired ! Erwin , went Frogging tonight so we get a girls night watching movies and being lazy . We hope everyone is doing well and all the kiddo's are having a great summer . ** Prayers for a safe trip to Stanford for our friend Elizbeth . And Prayers for a safe trip to GA for our friend Lindsey .
TodayJust wanted to make a quick post . To ask everyone to please add our little friend Katilyn to their list of prayers . Her and her family could use many caring thoughts and prayers at this time . We love you little princess !
TodayOkay , here goes the jornal entry I have been trying to post all day . But , each time I do I get choked up & upset . After , Haley being picked -up to go home yesterday evening . We got a call to go get Haley again . Kim , was beign rushed to the ER . She was bleeding very severly . She had to have an ER sugery . She had a C-Section performed , she was pregant in the right tube . It had burst , and she was alot more futher along then first expected . Our family , is really going through a tough time at the moment . I have Haley . Kim , will be in the hostipal for a couple of days and then have to be off for 8 weeks . Kim , is taking it hard , but we all will be right there for her through it all . Thank you for all the prayers , we know that everything has it's own reason . But , it is still so darn hard to cope with it . On a good note we have heard from Rut , he is doing ok . We miss him so much ! But , we know he is ok and that makes these better . We have a Ball game tonight , that will be go to . We don't want to change Destiny's routine and let her get upset about things . She is doing well and her mouth is healing wonderfully ! Caring thoughts to all ...
TodayOkay , you all we need some major prayers coming our way ! On Sunday night Destiny had a big fall off the potty . She got hurt pretty bad and we could not get her to stop bleeding . We rushed her in to the ER . She had a lip contusion , torn frenulm , and 4 baby teeth were loose (but since then they have seemed to tighten back up) . She is a tough little girl she mostly cried because of the blood . I think Mommy cried more than Des. She scared both her Daddy and I to death ! She is better now thankfully !! My sister went in for many tests today for the baby she is expecting . We will be going back Monday for some more tests and back to talk with the Dr. on Tuesday . Not , much other than VBS , taking care of Destiny , my sister and Haley has been going on . I am wore out !!! I pray that the rest of the week goes smoothly and the tests for the baby go well on Monday . On a good note , as of Monday we are no longer owners of a mini van I offically sold ours Monday !
TodayWHEW ! What a day , tonight was our first night for VBS . I am bet ! But , boy how rewarding it is to be teaching little ones about Jesus . Destiny , really enjoyed it tonight , she loves church and love her church family . I can not wait till family night so , Erwin can come see his little Princess sing her little heart out in front of the church . We will sure be busy all week , between VBS and everything else that we have planned for the week . * In closing I want to ask everyone to please pray for my sister and her expecting little one . She was rushed to ER late last night and is on complete bed rest till we bring her into see a specialist Tuesday . Destiny , does not know about this as of yet . I don't want her to worry . So , I am trying to keep in together for her sake . Which is hard being I tell Des. everything ! I know what the powere of prayer can do , so please keep them going till be know what will be on Tuesday . Thanks and Bless you all ...
TodayWe sure have had a nice Saturday ! Mostly , because of all the laughing Destiny did today . She was in such a good mood today . We enjoyed being in the pool all evening , and that is her favortie thing to do is swim . She loves the pool , she has since she was very little . We also love it , because we get to see her little legs kick while in the water . Which is awesome !! Daddy , had is guys night last night going frogging and I got a girls day today . Today , was our meeting with our Fire Women Auxiuarly with the fireman dept. which I love being apart of . It is so nice to get to be around other women and at the same time helping our commuinty . We have alot of fun and exiciting events planned for this fall . We have another big day Sunday , & then Sunday night is our first night of VBS . Destiny , is looking so , forward to it . I am honored to get the chance to teach little kids about Jesus , and better yet I am teaching Destiny's age so that will be alot of fun !
TodayWe got a call today , from Destiny's Dr.'s office . He will be out of the office next week so they had to reschedule our apt. for the following week . Which , at that time Destiny will have her re-check from being sick , her kid-med apt. , and get her Swallow Study apt . She had a good day , going to the library and shopping today . She is feeling great !! We are so BLESSED !!!
TodayWell , Destiny's cough is all gone finally ! We are so thankful for that !! She is feeling lots like herself now . So , we are getting ready for a fun weekend . We have so , BIG NEWS to share with everyone . My sister Kim is expecting !!! She found out yesterday . And we could not be happier !! We are looking forward to making Ne-Ne's house full of little ones to spoil (LOL) . Between Destiny , Haley , Wyatt and this new baby Ne-Ne will sure to be in debt ! Congras ' Kim , Danny and Haley . We are so happy !! Destiny , had her Ball game tonight . She had so much fun ! I was so happy for her she loves Ball and she had a HUGE grin on her face all night during the game . She loves the kids , game , and feeling normal . I am so proud of her !!! I hope everyone has a great weekend , full of fun and good times with their kiddos this weekend . Enjoy them they grow up so , fast !!! God Bless you all ...
TodayWell it was off to the Dr. apt. early this moring for us . Destiny , had a really bad night . She awoke last night around 11 pm with a bad dream , that lead into a case of severe tremors . Both Erwin and I jump up to check on her , I saw that she was having so trouble coughing and breathing . I pulled off her Bi-Pap and she started throwing up everywhere . The Dr. said her cough & rattling is still there but , she is getting better from last weeks apt. (that was good news to hear) , he gave her another anitbotic to take for 5 more days to make sure things don't get worse . As , far as the throwing up problems , we will be having another Swallow Study schedule on her apt . next week . All in all in was good news , although we are nervous to what the Swallow Study we bring for us . We did get some good news today , we have a buyer for our van , YIPEE ! We will be selling it this week !!
TodayDestiny , has had a really nice 3 day weekend . She is still taking Breathing Treatments every 2 hours . She took her last of her antibotic today , but still is rattling and coughing bad so we will be calling the Dr. in the morning to see if we need to get her on some different med.s to help her get well and over this cough . Other than that she has been doing great , full of spunk and keeping Mommy & Daddy on their toes . (LOL)
TodayWe had a wonderful Sunday BBQ with friends and family . Destiny , enjoyed swimming and playing with her cousions Haley & Wyatt . Daddy , worked alot on the playhouse today , it is looking really nice . Mommy , got to relax today and have a few drinks and laid out all day . Got a little to much sun ! We will be enjoying another day relaxing swimming and having a big fish fry on Monday .
TodayDestiny , had her pictures taken yesterday . They all turned out so GREAT !! The lady took 10 poses , they usually only take 6 . It made the job for Erwin & I even harder to choose which one's to buy . We walk out of there buying all 10 shots ! After , pictures Erwin took us out to eat Seafood . Today , we had to get up early for a Girl-Scouts evnt at the mall . And then it was off to the Harley/MDA event . We enjoy it so , much ! I want to thank Big Wolf , Monica , Diana for all the goodies that you all present Des. with (you all spoil her to much) and we love you guys ! And a big Congras' to our friends Johnthan & Paula !! Then this evening , we worked on the playhouse and did a little swimming . We have a long weekend which is nice being Erwin is off on Monday . We have alot of fun plans for our Memorial Day weekend , we hope everyone has a great one and let's all stop and remember why we are celebratingthe hoilday Monday . Check back with us , I am sure we will have lots to update about over our weekend . Blessing and Love to All...
TodayDestiny's , Girl Scout Awards night went wonderfully . Both Erwin & I were so very proud of her . She lite the candles for the candle ceremony , she said her girl scout promise and her speech . "Way to go Des." !! She received 6 badges in all , 3 pins , 4 fun badges , a boom box , beach towel , girl scout purse , bubbles , glitter lip balms , pencils , a cerficate , and she received a trophy for Most Dedicated ! The troop will be going to the Mall of Louisiana in Baton Rouge June 18th , to Build a Bear workshop and out to eat for there summer trip . Destiny , is really exicted about that . We have a full weekend ahead of us , Girl Scout event at the Mall in the morning , MDA event afterwards , the home to work on the "castle" , swim , and grill . Sunday will be church and trying to clean out our van (our home away from home) LOL . We are selling it , and boy it is in need of cleaning . Destiny , is going to have her pictures done today . So , back sure to check back with us and get a sneak peak for the little photo beauty ! Have a great weekend !!!
TodayDestiny , had a pretty rough day yesterday . She was really hyper all day (due to her medicine that she is on ) and by late evening she was really tired and fussy . She started having a bad rattle and wheezing , and her O2 dropped . She spelt pretty good though . This morning , she is in alot better spirits and feeling alot better . She is not coughing near as bad . We hope that this is a sign that is is almost out of the woods and well again . She got to have a friend over today , Avery came to spend the day with her . Hopefully , that will help me out to to get somethings I need to get done . The last couple of days Destiny has been real needy and clingy . She has her big Girl Scout Awards tonight , we are very happy she feels up to going . We are really exicted about it , make sure to check back with us for all the details on her big night . And thanks for all the prayers and kindness for our little girl .
TodayWell it was back to the Dr.'s very early this morning . Destiny , had a bad night and had alot of trouble breathing even with her Bi-Pap on . She woke this morning with 103' fever and a really bad cough . She also started vomoting . The Dr. did blood work too. She has a really bad Sinus Infection the Dr. said . It has not moved into her lungs yet (thankfully) ! She is on an antibotic and a medicine to help her get all the yucky stuff broke-up . Along with yet another BT medicine . She also has to wear her Bi-Pap as much as possible during the day , till well . (she is sleeping peacefully now). It should be soon gone from her system , if not we are to get back into the Dr. Friday . We will be skipping both therpy and the ball game tonight . We have to make sure to get our baby-girl well . She was not to down about it , she is really sleepy and just feels bad today . We apprecaite all the sweet post , calls & prayers last night and today . It means alot to know Destiny has lots of loving and caring people there for her . Mommy , is really tired and nervous have been crazy today . So , I am headed to rest while Destiny is sleeping . Keep the prayers going , we have to keep our girl home and away for PICU !
TodayWell it has been a very emotional day here for us ... Starting off my a rough night with little sleep in our house Sunday night . Destiny , coughed all night . She did not sleep well at all . Both Mommy and Daddy was up helping her cough and not being able to sleep for worring about our baby-girl . This morning Destiny woke up tired and coughing still . She has also ran fever off and on all day . We called the Dr. she is for sure sick ! We had to go in to the Dr. office . Her Dr. got us a new Breathing Treatment machine , this one can travel with us and is one better for Destiny's needs . She is on treatments with 2 med.'s every 2 hours & has to use her inhaler 2 times a day . Hopefully along with all her other medicines she will soon get over this yucky stuff ! Keep her in your prayers please ! Being that she was so tired and sick we skipped ball pratice tonight . We hope she will feel better for the game tomm. night . She was really down about missing tonight , and it will be worse if she has to miss a game . On top of Destiny being sick ; we had to go see my brother off today . We all took it really hard ! Both Des. and I drove away with tears falling . Sure hope Tuesday will be better for us .
TodayWe are asking everyone to please say a prayer for our friend Katliyn , who is sick . For my mom who , will be getting her tests results this week . And for my brother who leaves out Monday for training . Thanks and Blessing to All ..
TodayWell , my little brother is offically graduated ! Way to Go , Rusty !! We are so proud of you and the choices you have made for your future . He recieved a lettermans jacket , many awards , a fully paid scholarship , and a milatry award . We were so proud of him ! Today , we will be having a big crawfish boil / party for him graduationing and a farwell goodbye too . He leaves out Monday for training . Destiny , is doing really good . Loving her "tink" . She is a little sad that her Rut is leaving . So , I will be making sure she keeps that off of her little mind and enjoys the day with everyone . Hope everyone gets out and enjoys the beautiful weather and has a great day !
TodayWell , we I am slowly getting better . I still have several days of med.s to take and when I am done with all the med.s if I still have so pain I have to go in to see a specialist . Let's pray that I soon am completly well . At least now Destiny , is back home and I am able to lift her somewhat better. She had a really fun time at Maw-Maw's house this week . She helped get the house and yard ready for Rusty's big graduation & go away party for this Saturday . And she got to have Haley over with her everyday . Destiny , went and got something yesterday at Pet Smart ... Her very first Guinea Pig !! Her name is "Tink" . She is very cute and sweet with Destiny . We went to get a Chilluia pet but , after finding out how needy they are and that they get sick often Destiny chose the Guinea Pig , it best fits our life style and it is something Destiny can feed by herself and get it out and love on . She also out the works to go with Tink , the cage , bed , toys , food , litter , leash , pet carrier , fresh fruit . We now have a baby in the house , Destiny says Tink needs lots of love and cuddles . She loves it so much ! She is really cute to watch talking & playing with it . Then last night was the 2nd ball game for us . In full uniform this time . Destiny , was so cute !! She batted really well and zoomed to the base even faster with her new batteries . While in the field she played tag with her buddies Hunter and Josh . They said they were looking for butterflies ! LOL . It is so awesome to watch her get to play with other childern like her . Today , we are resting up all day , tonight is Graduation for my little brother . And then his big crawfish boil graduation party / going away party . He leaves out at 6 Monday morning flying to Viringa Beach to get his last training in for National Guard . He will be gone 6 months to a year . Then he has already gotten is orders to go off to the war . We all are sure going to have one emotional roller coster of a weekend . Hope everyone has a great weekend and enjoys their families !!
TodayWell boy when it rains it pours , LOL . Monday , we had a really good day . I took Destiny shopping she got her first ball helmet (purple) then we went to the Mall and had it airbrushed (pink flower with a baseball in the center , her name in rainbow colors , and a big hige colorful butterfly) . We went to eat Chinese (Destiny's choice with Stef ) and then ran by to the bow store and got Destiny a bow to match her dress for her pictures next week . After , a day of fun in town we headed off visit Maw-Maw and see how the testing went (she was feeling ok just a little sore) . We should know the results next week . Then we went to ball pratice , Destiny is still on 2 and base so , we get alot of the balls , she is getting really good of knowing where to throw them . She also got her uniform (it is very cute ) she is #2 . I went and got her a matching bow with softballs on it and matching socks with the words homerun and a baseball on them . She is going to look so , cute for Thursday nights game . After ball pratice Haley , got up in the van with us and came home with her Des. although the night ended soon . My back has been hurting for a year since my wreck , I had to go therphy for it for about 7 months . It easied up alot , but I guess in lifting Destiny and getting her chair up the ramp in the van , I did something to it . Well when I got home , I could not feel my left leg and my back was in some major pain . Erwin , rushed me into the ER at 8 . I had blood work , lab blood , & xrays done and they gave me 5 pills . My heartrate was very high and also my blood pressure , they said it was due to all the pain . I have a lower lumbar strain and a pinced nerve . I am on 3 medicines one pain , relaxer , and a steriod (for all the swelling). And I can not life anything for 7days. Thankfully , my mom is off this week on vacation !! yesterday was rough I had a reaction to the pain med.'s and cold not keep anything down . I feel alot better today . Just some sore . I am going to try and take it easy all day , being Thursday is a big day for Destiny . So , make sure to say a little get well prayer for me . And check back with us later to see how Destiny's Thursday goes . Many love and caring thoughts for everyone ...
TodayOur Friday night was nice we grilled with friends . Destiny , got to play with Wyatt which was cute getting to watch Wyatt now relaize who he was with . Destiny , thinks he is so precious and I think he is in love with his Des. also . I want to start our details about today , out by saying thanks to everyone that bought a raffle ticket , donated money , bought BBQ plate lunches , and thanks to all that came out to join us today . A special huge thanks to "all" the firemen & women , the ladies auxiarly , Sonya , Mr. Bobbie , Ms. Mickey , and our list of sponsers (to many to name) . Destiny , had so much fun seeing and getting to have hands on with the fire trucks . All of your kindness and caring hearts for out family meant the world to us , we will never forget today . We are speechless !!! As you can tell , Destiny's Benefit was a great sucess !! There were so many people there to suport our little angel . Destiny , was not a bit shy full of spunk today ! She actually talk to everyone and even went outside with the fireman without Mommy or Daddy . The Benefit money was made by alot of wirk from the Firemen , sponsers and the big raffle . They sold almost 2000 in raffle tickets and over 900 of the tickets had Destiny's name on them . Destiny , got to draw out of the bag for the winner of the Raffle and guess what she drew , her own name !! She won 300 dollars ! We are not comfortable posting on line what the final total of her Benefit was , but needless to say we were shoked !! Destiny , will not want or need anything anytime soon !! We pray that everyone that has learned of our little girl illness just remembers her big hug smile everyday that they think of her also remember what a blessing life is !! No words could ever express what SMA does to a family and is doing to our babygirl's little body . But , having people like we do in our lives helps make the day a little better . After , the Benefit we headed to Targert to get the promised movies , I told Destiny and Haley that if they were really good while at the Benefit I would buy them both a new movie . So , they were and Destiny got Cheetah Girls and Haley got Dora Princess movie . Everyone , is gone and we are just taking it easy and of course watching Cheetah Girls !! LOL . So , today wrapped up a wonderful weekend for us . This week ahead is a very , very busy one for us . We have things to do each day . So , make sure to check back with us each day to see what the week brings our way .
TodayOur Friday night was nice we grilled with friends . Destiny , got to play with Wyatt which was cute getting to watch Wyatt now relaize who he was with . Destiny , thinks he is so precious and I think he is in love with his Des. also . I want to start our details about today , out by saying thanks to everyone that bought a raffle ticket , donated money , bought BBQ plate lunches , and thanks to all that came out to join us today . A special huge thanks to "all" the firemen & women , the ladies auxiarly , Sonya , Mr. Bobbie , Ms. Mickey , and our list of sponsers (to many to name) . Destiny , had so much fun seeing and getting to have hands on with the fire trucks . All of your kindness and caring hearts for out family meant the world to us , we will never forget today . We are speechless !!! As you can tell , Destiny's Benefit was a great sucess !! There were so many people there to suport our little angel . Destiny , was not a bit shy full of spunk today ! She actually talk to everyone and even went outside with the fireman without Mommy or Daddy . The Benefit money was made by alot of wirk from the Firemen , sponsers and the big raffle . They sold almost 2000 in raffle tickets and over 900 of the tickets had Destiny's name on them . Destiny , got to draw out of the bag for the winner of the Raffle and guess what she drew , her own name !! She won 300 dollars ! We are not comfortable posting on line what the final total of her Benefit was , but needless to say we were shoked !! Destiny , will not want or need anything anytime soon !! We pray that everyone that has learned of our little girl illness just remembers her big hug smile everyday that they think of her also remember what a blessing life is !! No words could ever express what SMA does to a family and is doing to our babygirl's little body . But , having people like we do in our lives helps make the day a little better . After , the Benefit we headed to Targert to get the promised movies , I told Destiny and Haley that if they were really good while at the Benefit I would buy them both a new movie . So , they were and Destiny got Cheetah Girls and Haley got Dora Princess movie . Everyone %
TodayDestiny , had a really good day today ! We went to the Zoo's Earth Day event . It also was a Girl Scout/Boy Scout day there too . So , she earned a really cute new badge . She was so proud ! Kim , Haley and Stefanie and Wyatt join us . It was nice to have a girls day out with the kiddo's . We enjoyed our Rug-Rats and had lots of laughs too ! We hope to have a nice afternoon and a great Sunday . We are exicted about Destiny's Benefit and so , honored that so many hearts have been touched by our little angel . We will be sure to post all the details of her big day tomm.
TodayDestiny , had her PT/OT yesterday . She did well and all the modications to her chair were approved by the therpist . We discussed some therpy things that Destiny needs at home we hope to be ordering some things soon . After , therpy she was very weak and tired . On Wednesday she was the same way , she never naps and on Thursday she took a 2 and 1/2 hour one when she woke up is had a slight temp . Yesterday , evening she was not herself and just wanted to be held and loved on , we went to bed early . I pray that she is just having want we call her weak days and not getting sick . I plan to keep her home today and let her relax so , that hopefully she feels up to having a fun weekend . Reminder to all that what to come and join Destiny for her Benefit it is this Sunday , if you need the details or directions to where it will be and the time please email us or call . They are looking for a Big turn out , so it should be a fun filled evening . Please , keep the prayers coming for my mom , Monday is the big testing day . And keep Destiny on your hearts to , lets hope she gets up this morning full of energy and her huge smile !! Blessing and Prayers go out to all ...
TodayWe are asking for everyone to please prayer , for my Mom (Destiny MawMaw) she went in to the sugeron today and will be going on the 16th of May for more testing then back to the sugeron on May 26th for all the test results and possible sugery . We are all so scared and worried . But , we know what the power of prayer can do . So , just please remember our family in your thoughts and prayers .
TodayWell we got Destiny's chair modications today . They moved down her foot rests , and made them at a 90 degree , adjusted her thigh supports , adjusted her rib supports , and replaced her batteries . The batteries she has now we stay charged longer periods of time . We also got new buckles for her feet rest ordered , some knee supports ordered , and a tray ordered . We also got to discuss some lifts for vechicles . There are a few different options to think about . We have to deciede what we be best for Destiny's chair and also what will be the easiest for Mommy .
TodayWell , today has been a busy day . Destiny , and I went and got some bills paid then it was off to Girl Scouts meeting . The girls worked on the ceremony/awards day . Destiny , knows all of her promise and her candle lighting part too . I am so proud of her ! We have one more pratice meeting before the big night . Then it was off to Destiny's 1st Ball game . It was awesome !! Both Erwin & I was all smiles and then all tears of joy (that we are getting to share all these things with Destiny that we thought we would not see). Destiny , had a blast and started tearing up when the game was over she did not want to leave ! And okay , yes I have to brag a little . Destiny , hit wonderfully made it home both times she batted . And got her first , RBI (which means she batted a player in ) everyone was cheering for her ! They're uniforms did not make it in for this game , but we will get to get them on Thursday's pratice (thankfully) ! Destiny , played second base . We have a little pro in the house (and it is so awesome to be able to get to experience all this like a normal family) . SMA will not get in our Princess's way !!! We have a apt . at 9 in the morning with the wheelchair tech , he is adding somethings to Destiny's chair , and also getting her a new stronger battery . Thank you all for contiuning to pop in and check on what Destiny is up to . It means so much !! Each day we have with her is our gift and we hope each time you think of her you smile !! Love and Blessing to Everyone ...
TodayWe are back home from our Monore trip . It was so awesome ! We a really enjoyed it !! Thursday night we got there and went visited my grandmother . Friday , we got up early and headed to the golf torunment it was alot of fun . Destiny , got to play with her friend Jennifer . And was stuck to Miss. Paula side the whole evening . Destiny , got to draw the names for the prizes . She also was presented with a big gift , she got a princess barbie set , princess art set , barbie phone , purse , barbie hat , DVD , and lots of candy . She was tickled ! She had a blast playing and riding around on the caddy's . The big news is Destiny will get to do this event again next year . And the really exciting news is that Destiny and Erwin were invited to be on the Citgo Monroe Bass Pro fishing TV show . They will get to use the Citgo Bass Triton boat with a pro and go to a Private lake . Then their show will be on TV !! WOW , huh !! Friday , night we went out to dinner with our friends Johnthan and Paula . Then it was off to see our Hotel . WOW , was in fancy ! Destiny , wanted to move there . LOL . Saturday we went to celebrate Destiny's bday with all my family . Yet a another cake for this spoiled girl ! She got lots of nice gifts and enjoyed her day . She got a white vanity for her room and she is enjoying being able to see herself in a mirror . Today , is Mother's Day I am happy to get to spend the day with my baby-girl . Family is going over this evening for a Cookout . Destiny and Erwin are still keeping my gift a sercet so , I am iching to see what they are up to . Thanks , Belinda ,Johthan , Paula , Julia and Mr. Benny for a wonderful MDA event . We are honored you all chose our little angel to spread the word about MDA and hopefully we will get our cure's in the future !
TodayWe are asking for everyone to please say a prayer for our little friends Wyatt who got admitted to the hostipal this morning . He is feeling really yucky ! And also for Joseph who is in PICU for a week now and is very sick . We pray that you little guys get better really soon . Stefanie know that I am just a call away if you need me . And Maria , know that God' will get you all through this .
TodayWell we will be headed out tomorrow for the big Citgo/MDA golf torunment . We will get to leave out early than planned , because of Destiny's Ball game being forfited (cause the other team was going to have 3 kids on able to come) . So , our first game will be Tuesday night . And we will get to add an extra game onto the season to make-up for tomm. night game . Destiny , was a bit disappointed but , she is exticted to get to Monroe sooner . We got our call about our Hotel , they got us a 2 room suite . Destiny , thinks that is funny and cool . That she gets her own room . We are planning on a fun weekend . And we hope that everyone also has a good one . We will be sure to udpate when we return . Please , say a prayer for our friends Wyatt , Ryan and Ian . Who are all very sick . Love and Blessing to you all ...
TodayOkay , so today is the BIG BIRTHDAY of our Little Princess Destiny ! HAPPY BIRTHDAY !!! Guess , I will start with last night . Destiny , had ball pratice she learned how to throw the ball last night . She takes a running start then throws , by doing that she gets the ball really far . She just giggles ! Then at her turn up to bat , she it the ball hard all by herself for the first time , when she got to first base all you could see was her big grin and dimples ! After , pratice we took her to get her very first softball and glove . You will never believe what her glove colors are . Hot pink & purple , cool huh . She was so happy to have her very own "real" ball glove and ball . Today , we spent the day together with Haley and Ma-Maw . We watch Home Video's together , lots of tears and tons of laughs too . It was a nice day ! I can not believe our baby-girl is 6 !! Then this evening we decieded to have a big fish fry , since on Friday night we will be going out to eat at Outback while in Monroe . She again had a Birthday cake , you know Mommy & Daddy have to spoil their Princess ! Our day was wonderful in everyway , the main blessing about to day , was that we again made another birthday milestone . HAPPY "6TH" BIRTHDAY DESTINY HOPE !!!
TodayWe have had a really great last couple of days . On Friday , I took Destiny to eat lunch with her Daddy . Then we went to spend the rest of the afternoon with Greta and Heidi . Destiny , had such a good time . When it was time to leave she cried to stay . We caem home and picked up Erwin and went to Wal-Mart to get all the last minute party stuff then Destiny had her first Ball Pratice . Destiny , was all smiles the whole time . She had so , much fun . She has really taken up with a little boy on her team . They are alot alike both are very shy but outgoing once they warm up . It is so neat seeing her get to be with other kids like her . Saturday , was the Big Birthday Bash . The whole day was wonderful . Destiny , had lots of family and friends come to share the memory with her . Lots of presents and lots of laughs filled her day . Thank you all that are in Destiny's life you all brought a ray of sunshine into her day . And thanks for all the nice gifts (you all spoil her to much) !! We always go a little over board with Destiny's parties but , her birthday's are a milestone to us . She has come a long way . We thank God everyday for our miracle . And we apprecaite all the wonderful caring friends and family we do have in her life (it helps the road we have to travel everyday a little smoother) . After , the party we shared the Disney videos with everyone . Kleenex was being passed around the whole time . (LOL) Then Saturday night we had a truck full Destiny invited Haley and Morgan to stay the night with her we headed over to Stefanie and Theorn's for a Big shrimp boil we had as part of the Birthday Bash . There was a house full ! Destiny , enjoyed playing with Wyatt and Reagan and all the girls . We got in late last night and trying to get rested up this morning , we have a Big Crawfish Boil this evening to go to . So , make sure to come check back with us later . And again thanks , everyone for making our Princess's Special Day so , wonderful !!! Oh , and if curiousity is killing you all ... Destiny BIG gift from me and Erwin was all the material for her HUGE CASTLE PLAYHOUSE !! Erwin , will be bulid it and hopefully it will be complete in a few weeks . It will be 12 ft . tall with 7 ft. celings , towers , siding , singles , 2 windows , and guess what a real sink (with real water) , lights and a real ice box . She got all this yesterday . Boy , was she so happy !!! Mommy and Daddy brought all of it and Ma-Maw and Pa-Paw got her the ice box . We will make sure to share the photos of the Princess's Castle !!!!
TodayWell yesterday , we did not have ball pratice . Our coach had to work late . We are supose to have it tonight , if weather allows . We did find out that , the first game is next Thursday night at 7 . They are hoping the uniforms will also be in by that time . I what to say a BIG Congralations to Erwin , he got a new company truck on Wednesday . You resevered it sweety ! Well , Saturday can not come soon enough , we all are exicted and ready for the Birthay Bash . We can not wait to update about her party and let you all in on the BIG gift from myself and her Daddy . She is going to be so HAPPY !! Hope you all have a good Friday . We are off to town to get the last minute party stuff today . Love and Blessing to Everyone !
TodayThe MDA Golf torunment was so , awesome !! We were suppose to go out about 4 , but we got called to come out at 11 . We had a full day from 11 til 6:30 . Destiny , had so much fun . The plaques were so , beutiful !! It was so neat to see my little girls artwork being shared with so , many people . She was so cute too , everyone that received a plaque had their photo's made with her . She of corse , had the pagent pose going on !! LOL . We will be going to the citgo MDA Golf Torunment next week , we are getting to stay in a Hotel both Thursday night and Friday . Thursday , they are having a fancy dinner in Destiny's honor . Time to go shopping for some nice clothes , I guess , Huh . Budweiser , sponsers this one and they are having a BIG party Friday night . Our friends Johnthan and Belinda wanted us to stay and enjoy it all with them . We all are exticed to get away for a couple days . And show people what all the money is going to . One day we will have a cure hopefully !! Destiny's , little face and personalilty is reaching out to some many people and tugging at their hearts !!
TodayWell yesterday , was a full and busy day for us . Destiny , had PT/OT which went well . Although , her feet were really tight yesterday . So , we are booting the hours of wear in her splints up this week . After PT/OT it was off to girl scouts . We will be having the awards ceremony the night of May 26th . Destiny , gets to invite some family and friends to come also . We are so exicted to let everyone see all the awards our little Browine will be getting , she will also be saying the Girl Scout Promise and doing the lighting cermony by herself , I am one proud Mommy !! After GS we headed off to met Erwin for Destiny's first Ball meeting . Which went great ! Both Erwin & I are so anxiuos for the season to start . This is something we did not think we would get to see Des. do ! And we could not be more happier she wanted play . We really liked the coach and all the kids on her team . She already is making new buddies and her friend , she already knew she playing on her team also . I am sure we will have lots of fun watching those two zoom around in the games ! LOL . She has her first practice this Thursday . She is so exicted ! We will be catching up on some much needed rest today , then this evening it is off to the MDA Wal-Mart golf torunment . I went and bought Destiny a really cute outfit for the occastion . You know (me) got have the Princess looking cute for all those pictures !! LOL . Only 3 more days till the BIG Birthday Bash . I have yet so much to do , to get the house ready . Although , I do think I am finished shopping for all the gifts . At least I say I am till , I go to town again ! LOL . Thank you all for staying up to date on our little Princess . We sure have a busy summer and hope you contiune to check in with us to see what new things Destiny is up to . God Bless you all ...
TodayWell , it is for sure a just a bad bug !! Destiny , felt better all day Sunday . But , boy did Mommy get bad sick . I could not hold anything at all down . I was sick from 11-9 yesterday . Erwin was fishing , so Sonya keep Des. most of the day . Destiny , got to go feed the horses (for her first time) they took lots of photo's for Mommy . Thanks , Sonya ! We love you to pieces ! You should feel very privigle you are the first other than family to keep Des. When Erwin got in Des. and him had lots of fun watching movies and cooking together . The kitchen was a mess this morning . But , at least my girl had fun ! LOL . Destiny , was had more more spell of throwing up late last night after supper . We both are taking medicines and trying to get to feeling 100 % better today . We have a really big and full day tomm. So , wish us the best of luck , feeling better and make sure to check back with us for all the fun updates on our day tomm. Also , be patinetly awaiting all the updates on Destiny's 6th Birthday Bash . She is getting a really BIG Birthday present from Mommy & Daddy !! Lots of Love to Everyone !
TodayOkay , we got ourselves a sick duck ! Destiny , woke-up from 1-3 a.m. throwing up . It was so , severe it went everywhere and we had to put her in the tub . After throwing up she started having her tremors . This morning she woke up sick again , but is drinking liquids and trying to feel better . She is smiling and happy . Dunno if it is a bug or it is her stomach problems and needing to get in to the GI or what . We will watch her close today and see . Please , say a Big Prayer for Des. we sure hope that she is not getting bad sick . Only one week from her Big Birthday Bash !
TodayWell boy do we have some awesome news ... Destiny had her eye apt . today . She no longer will have to wear eye glasses !! Yipee ! She is so , happy about that . Her eye have not gotten any weaker from her last eye exam . We will now only have to go in once a year to check to make sure she is not losing any strength in her eyes .
TodayWe have been really busy today , getting our pool and yard all pretty and clean for the Big Birthday Bash on the 30th for our little Princess ! She is so , exicted ! We will be going in the morning to order her cake and to get all her Birthday Party supplies . Daddy and Mommy are getting just as anixous for the "6th" Birthday as Des. This is yet another milestone most parnets take for granted , to us it means so much !! We got our call tonight , about Destiny tee-ball they have picked the teams . Destiny , got a lady coach . She is very happy about that ! We will have our first Tee-Ball meeting Tuesday night from 7-8 . She is tickled to death ! Destiny , has been doing wonderful lately we are so thankful for that . God truly answers prayers ! Destiny , has a Optometrist also in the tomorrow evening . We are going to have a relaxing weekend , we have lots of flowers to plant and cooking on the grill to do . It will be nice to have some home time . We hope that everyong has a great weekend . We contiune to thank everyone for being a part of our angels life !!
TodayWell , we are going to busy the next several weeks ! Our calendar is filling up really fast ! On April the 27th , Destiny has the Big MDA Wal-Mart Golf Torunment. (there will be lots of awards she will be presenting) and what is so neat about it is that they are having all the plaques made with Destiny art-work . Destiny , B-Day party will be on April the 30th . We can't believe she is about to be 6 years old . How blessed we are for that !! So , we will be having a HUGE B-Day Bash . On her actually B-Day which is May 3rd , she has chosen to go out to eat at Outback . Then on May 5th Destiny has been chosen to be Monroe's Citgo Ambassorer . And we will get to stay in a Hotel Thursday night and she will be presenting awards again on Friday at the Citgo golf torunment . Then on May 14th will be going to Baton Rouge of the SMA roll and race . We can not wait to see Joshua and Anna Rose ! Then Destiny's Big Benefit will be on May the 15th . Lots of exicting things to do ! And lots of things to get prepared we are busy making a slide show of Destiny's Disney trip for her Bday and benefit , ordering her decorations for her party and trying to figure out what to get a PRINCESS that already has it all !!
TodayWe have some good news to share .. Destiny's new bath seat was deleivered yesterday . It is so , nice and is going to be a back saver for Mommy . Destiny , also reports that it feels so good on her back . So , that is another good plus . Also , we were told that this past weekend while we were at Disney our two local convienent stores Sunrise grocery and Kolin General both had a big event collecting money for Destiny's benefit . We were told Destiny's photo was on a huge sign near the stores for the weekend . Our own little celebrity !! We feel so blessed to have a caring and loving commiuntity to live in . I will be getting all the info . this week on our plans for her 6th bday and the times for her benefit . I will try to get all of that posted soon .
TodayOkay , so here is the Rundown on Destiny's Wish Trip . We tired to say a little about each day . I only wish words could express all the fun and wonderful memories the week brought us . I know sharing a few photos out of 200 we had , does not do justice for all the exictement and joy that was in Destiny's eyes . We also tired to capture some of that sparkle in lots of video too . Wish we could share them all with you . We want to Thank Sonya , Mandy , The State Troopers and the Fireman for making Destiny's wish come true ! We also have some special news to share ... on Destiny's 10th Birthday she will get to go back to Disney . WOW ! huh . Well , here it goes ... Monday , we enjoyed our Resort , there was so much to see and do there . It was wonderful ! We tired to rest up from our long drive but , Destiny was so , happy and hyper !! Her fav. thing was to play in the Surprize Sprinklers . Tuesday , we headed to Animal Kingdom . Her fav. thing was the Sarfari Ride . She loved the shows too . She went to the Lion King Show , Tarzan , and Pochantics show (which she got to open all by herself) what a memory !! Wednesday , we went to Magical Kingdom she had breakfast with the characters she got Mickey Panpakes ! All the rides were her fav. she rode all of them most more than once . The Wishes Fireworks show , was awesome . She loved seeing Tink fly out from the castle . Thursday she went to MGM . It was aso neat . Lots of shows . Ariel , Beauty and Beast and Playhouse Disney !! Friday , we wnet back to Magical Kingdom . She rode the Haunted Madsion ride ! And was not scared ! It was Erwin's bday on this day , we got him a BIG Disney bday cake hat to wear . He was a good sport about it ! LOL Saturday we went to Ecopt , Destiny was part of the Crush Nemo show , wow huh ! She brought lots of things on her trip , to many to name !!! LOL We will remember this time with Destiny forever always . It was Magical !!! We are looking foward to finsihing Kindergarden Homeschool in the next couple of weeks and getting ready for a busy and fun summer . We hope everyone cherish's each day with your loved ones . Today is gone and tomorrow may never come !!
TodayWe are back home from Disney .... And all I can say is that this week has been so , wonderful !! It was the most Magical Expericence !! It was a wonderful unforgetable week for us all . Each day brought something new , and each day Destiny's face glowed ! It will be a week we all three will chersih forever . The Resort was so , very nice we were so pampered ! And of course Disney (there are no words to express the joy it brought Destiny) . We already have a busy week ahead , now that we are back home . I will get around to updating more about our trip this week . Destiny and I are going to sit down and give you all a day to day update of her trip . With of course LOTS of pictures . Destiny , has a new poem and the works of her new Disney page . Make sure to check with us later for all the great details and photo's . So , we patient it all will be up soon !!! Love and Blessing , The Sanchez Family Ashley , Erwin and Destiny Hope
TodayWell, we are off to Disney! Wish you all could see how excited Destiny is at this time. She has her bags loaded and ready to go! She is talking nonstop about her trip. We want to thank everyone that has continue to be apart of Destiny's life. Those of you that have emailed us, posted on her sites, call us, and came to see her this week. We do not have a BIG family that is involved in her life, but with the love and support of the family who do have, and friends we have a lot! We will forget about SMA, all the medical stuff, and the unknown future of our journey with SMA this coming week. As we drive away on Sunday, our only thoughts will be having the best time of our lives with Destiny. We truly appreciate all the love and support you all have given us. We have so, much HOPE that one day we will have our cure for SMA. We have 12 video tapes , 6 rolls of film, ditagal camera with memory card. So, there will be lots of updating when we return. Please, keep Destiny in your thoughts this week. I am sure she will be all SMILES the whole 7 days !!! Destiny Hope PrincessDestiny DISNEY HERE MISS PRINCESS DESTINY HOPE COMES !!!!
TodayWell , we went today and got signed up for Challenger Tee-Ball . Teams will be picked this Saturday . We went and got Destiny her own own tee-ball set with a bat , glove , & ball. To practice on evening here at home . Games with be every Tuesday and Thursday's .
TodayDestiny , had a Big surprize today . Two firetrucks pulled up in our driveway and the Fire Cheif presented her with $200 for her trip . We just are speech less !! We can not wait for her Benefit to present them with a special something . Destiny , had her weekly Pt/Ot today . The worked her really hard being she would not be there next Thursday . She is now getting some padding and guard for her foot rest on her chair . For her bad foot . They are working hard with that foot in hopes for her getting braced soon . She is now up to 4 hours with her splints a day . We will be very busy resting , packing and getting ready to leave on Sunday . I am sure there will be more updates everyday , we have lots of company each day it seems coming and seeing her before she leaves off . So , hope you will contiune to check back with us later . Please keep the prayers coming , after returning from Disney Destiny will be admitted to Lady of the Lake for testing . Love and get apprecation to everyone in our lives !
TodayI forgot to say a special thanks to our friend Charlene for the CD she mailed us . It was so , awesome . Every song touched my heart and brought tears to my eyes . We love you !
TodayMore neat news to share today ! We were informed that along with being in our local Town Talk newspaper Destiny's photo along with story was in the local Market Place paper . Also , our annual Dogwood festival had Destiny's photo and Benefit tickets . Our little celebrity is all over spreading the the news about SMA all over the town . We are so , grateful for everyone that is doing all this !
TodayWell , another weekend is come and gone again ! This week will be really busy !! We have Haley over staying the night tonight so , I have my hands full for Monday . Tuesday , we head off to Baton Rouge to the Pulmongist for some intense testing . "Please keep Destiny in your thoughts and prayers" . We are very nervous about what the results will show , being she falled the first less invasive testing . On Wednesday we have her yearly dental check-up . Thursday , we are babysitting Baby Mattie all night and some of the night . Destiny , is exicted about making her some babysitting money ! Friday , we will start getting things ready to leave on Sunday . We will also , be scheduling Destiny's apt. with Texas Childern's . We are having it scheduled for after her Bday though , we only want good news from now till her BIG 6TH BIRTHDAY CELEBRATION . Destiny , is getting very exicted for her Wish trip !! Which is getting us all so anxious . Make sure to check back with us each day , I am sure there will be lots of news and exictement to tell each day ! Keep the prayers coming , they are want holds us together !!!
TodayWe got more big news yesterday morning .. Destiny , along with her drawing she did for the State Troopers will be on their annual State Troopers magazine COVER !! They have never had a child get this honor before , we are thrilled they have chosen Destiny smiling face to take this honor .
TodayDestiny , had a very nice day today . We stayed home and had lots of (one on one) time today . This morning when Destiny woke-up she had some trouble getting her arms down from above her head (the way she sleeps) . Then tonight at supper time she was very weak , she could not hold her sippy or feed herself . She started to cry , but Mommy helped her eat and drink . I hate having to try and expalin all these things to her , it is so hard ! I just let her know we love her unconditionally and Mommy and Daddy will "always" be there to help her . We are headed to bed , tonight early . Hopefully , a good nights rest with help her . We want to Thank everyone that is calling or stopping by saying their Congrad's to Destiny on her Wish Trip . It means the world to us , to know she is so , loved !!
TodayWell , we have a little Movie Star in the making ... Destiny , was on our local news tonight about her Wish Trip . It turned out so , nice !! I recorded it and Destiny is on her 4th re-watching for it now . She just kept saying that is ME ! She is so , happy about her trip . We had to make her list of things we needed to go buy for the trip and things that we needed to get packed for the trip . I took Destiny outside for most of the day , today . It was so very nice out . We worked in the flower beds . I have only 2 weeks before we leave then 3 weeks after we get back before Destiny big benefit and Big 6th Birthday party . So, lots of preparing around here to do . I want to thank you all that have been here for us during these last very exicting days . It means so , much to us and Destiny that she has loving family and friends sharing in her life .
TodayWe got a all early this morning from the news man , that Destiny was not on the 10 o'clock news last night , because they wanted to give her a full spot on the nightly news with her full spot on the nightly news . So , our little Movie star will be on Wednesday night on channel 5 at 6 pm . The newspaper artcile was great , a big article and a really good photo . We had to buy lots of newspapers today , Destiny was so proud !!! We went today and picked out our rental van . We will be traveling in style for the trip , we are to go on the 9th and pick it up . I treated Destiny today , to a girl day !!! She got to invite 4 of her girl friends to lunch and to see the new movie the Ice Princess . Of course Mommy , cried !! Because of all the Mom and daughter scenes . Destiny , really enjoyed her day today . We have more fun things planned for the rest of her Spring Break so , be sure to check back with us daily for more updates !!! And don't forget to watch the news !!!
TodayI special evening we all will NEVER forget !! This evening there was not a dry eye in the room !!! We had a house full of loving family , friends , state troopers , firemen , news and news paper reporters at our home . Destiny , was so thrilled but a little shocked by all the people present . It was so , wonderful what they have done for our family ! Along , with Destiny's wish being granted for a 7 day /6 night trip at Disney resort . She got a rental car for the trip , a big check to spend while at Disney , a Princess hand-made quilt (my a fire lady) , a hot pink shirt with her name manogrammed on it with her photo too , state trooper shirt , lots of stickers , coloring book , and was presented the "first ever" child Jr. Auxiliary shot with the fire-team and got a fire resuce shirt with her name manogrammed on it . It was so , wonderful !!! We had a party for her and the wish granters with family and friends she had Pink Princess cup-cakes & a Mickey cookie cake . She is sitting down on her quilt looking at all the Disney resort and trip booklets that she got today , she is so HAPPY !!! She will be on the news channel 5 tonight at 10 and in the town talk tomm. morning . Mommy and Daddy tired really hard to hold it all together today . Thank goodness for Kleenex !! We have to go in the morning to pick out of car at the dealer ship and we will be picking it up the Saturday before we leave out . We can not wait till April 11th ! A week of living life to the fullest with our Princess !!!
TodayGosh , the weekend is almost over already ! We had a very nice one though . Saturday was Erwin and My "6th" year annis. "WOW"! We have sure came along way through everything we have been dealt with !! "I love you Erwin" ! You are my rock ... We spent our day with Destiny (we would not have had it any other way) . It made everything we done Saturday alot more special ! Today , we had a nice family fish fry and got to watch Destiny and Haley enjoy theri Easter hunt inside the weather was very yuck out !! But , that did not stop our little angels from having a great Easter Day . We are now getting exicted for Destiny , her Wish Party is Monday night , we have lots of cleaning and decorating to do in the morning . I went a little nuts with preparing for it ! She is just so , happy and I want her to enjoy every mintue of this Wish . We will be sure to update all about it !! HAPPY EASTER !! Hope everyone enjoys there Spring Break with their kiddo's , Destiny and I have lots of fun plans for her week .
TodayWell went and paid my dues to the "Easter Bunny " today ! That is what Des. thought Mommy was doing .LOL. Actually , Mommy was fighting the crowd of people to get all the goodies Des. had put on her Easter Bunny List . And a few other things too . LOL . I love having a precious little girl to spoil . I sometimes go over board ! LOL . Also , picked up most of everything for Monday's Wish party . We have a nice Good Friday planned , Erwin is off so we will get to share the day with him . And Saturday is our "6" year anniversary ! Then it will be Easter Day we have lots of things planned for the whole 3 day weekend . Hopefully , the weather will stay nice and pretty all weekend too . I hope that everyone has a great Easter filled with lots of happiness and lots of laughter . We are exicted to share yet another Memory with Destiny . Be sure to check back after the weekend for lots of updates ... "HAPPY EASTER" !!!
TodayWe had a very full day yesterday . It was my Bday so , I decieded Destiny and I need a special Mommy and Daughter day . So , we headed out early shopping for her some new cute clothes for her Wish trip . Then she had her Dyno Splint apt. (her splints got re-sized & some things added to her splint for her bad foot) . We are hoping they will give her some range and she may soon we able to get her AFO's . She is to wear them 3-4 hours a day . Then she had Pt/ Ot they are really working on her fingers(both ring fingers). The Ot thinks the Tendon has moved (which has caused the ring fingers to be more weaken and folded. Destiny , St talked with us about Childern's apt , and gave us lots of info . to bring with us for that apt. Then after all that we went for Destiny's homeschool field trip , to the Zoo . We had invited friends Stef and Wyatt to join . Destiny , had a really good time she had lots of fun stopping and reading all about the animals . She loves learning . Then we headed to Mcdonalds for lunch (by this time Destiny was getting really tired and weak) so , afterwards we drove through Dairy Queen (for the Princess's Fav. Butterscotch ice cream) and got home long enough to rest before girl scouts . The troop put on a pupper show with their puppets they had made last meeting (Destiny was so, cute with her act) she named her puppet rainbow flower "LOL" ! It was a long day ! Destiny made every minute of my bday wonderul I would not have spent it any other way !! Last night we got to get a babysitter and enjoy some husand /wife time together (it has been many months since Desting has not been with us) it was nice but , we miss her lots , I went and got her first thing this morning !! LOL. I love my time with both you Des. and you Erwin ( you make me so , happy) !! And thanks for all my gifts .. I love them !! Destiny and I are going to be relaxing and getting the house all pretty and clean for the Easter Weekend and her Wish interview on Monday . So , for the rest of the week we will be pretty busy . But , be sure to come back and check often we have another fun filled weekend ahead ...
TodayWell , Sunday brought many surprizes our way .. Chantel (our friend) came by to surprize us with more work for the project she is doing for us . (I promise soon , as she is complete I will share) . Then yesterday evening family from Monroe paid us a Surprise visit for my Bday . We enjoyed it ! And today , we got our call .. It is offical !!! Destiny's wish will be granted Monday the 28th at 5 o'clock . The news and news paper will also be present along with a house full of Destiny's list of friends and family she asked to come . She is very , very happy !!! We will be leaving out on the 11th of April for 7 days and 6 nights !!! WOW !!! We are so , exicted for Destiny . We have a big day tomm. planned Dyno-Splints at 10 , PT/OT after , shopping , a cake to get ordered for next Monday night(wish party) , Girl Scouts meeting , and out to dinner for my Bday . So , make sure to check back with us later for all the details on our day !!
TodayWe Mommy (me) got a Big Surprize today ... Erwin & Destiny along with all my close friends planned a Big Crawfish Boil/Bday Party for me today . My B-day is this coming Tuesday . They have had it planned for about 3 weeks , sneaky guys !! I was so , happy and I love you all for making this day one to remember !! I really enjoyed myself !! Thanks , Erwin (you are the best and the love of my life) and Destiny (you are my angel baby you are the reason for "everything") !! I love and apprecaite all my gifts (you guys are the best friends a girl could ask for) !!! And Erwin & Des. you both better not be up to anything for Tuesday . Got that !! It was a truly wonderful day . We started out the morning with taking Destiny to the Mall and having breakfast with the Easter Bunny , she had so , much fun and we loved seeing her enjoy herself . I pray that everyone is staying cheerful and living life to the fullest !! Many Blessing to Everyone !!!
TodayWe got a call tonight about , Destiny's wish trip . They are still in the works of finishing up all the last minute details . But , they are trying to have us leave the 11th of April . We will be gone for 7 days and 6 night . WOW ! Erwin , bday is the 15th (he said it will be one he will never forget) Destiny is his world !! Destiny , is so , anxious !! Now , we have to get busy making our list of ones that will come to her Wish granting party , it may be as early as next week they said ? So , lots of planning and preparing to do !!!
TodayI had to write a letter about , how Destiny illness has changed our lives (this letter was for our local fireman & state troopers) I was asked to write it and GOSH of it hard to do !! So , I wanted to share it also hear on Destiny site . In hopes that it may help others or just sharing my feeling it my let others know about our live with SMA . So , here it goes hope you all enjoy !! "What a friend we have in Jesus , all our sins and griefs to bear ! What a privilege to carry everything to God in prayer .." I have always loved this hymn but never "really" uunderstood how true the words were till my world fell aprat . On May 3, 1999 our precious little girl was born . Everything seemed right for my husband Erwin and I . But , as Destiny's 1st Birthday got nearer , we started noticing she was having trouble crawiling and falling while standing . By age of 18 months a Neurologisht DX Destiny with having SMA 2 a terminal type of MD . The typcial life span he told us was 2 years old . The Dr. explained the diesease would weaken Destiny's muscles untill she was Wheelchair bound . Destiny is about to turn 6 and since her DX , we've watched Destiny lose one ablitly after another . She is totally confined to a wheelchair and can lift her arms and hands just a short distance above her waist , we now have to wipe her nose for her , roll her over in bed , put her arms wear she wants then , lift her in and out of her chair and tub , and drive a specialized van . Along with many other thing to many to list . I don't say any of this to complain , Destiny is worth every ounce of effort it takes to care of her . Rather , I share these things as a testimony of God's goodness . You see Destiny still has a lot of faith that God will either heal her or the give the Dr.s the knowleadge to find a cure , she says I am God's Angel and boy can we see that everyday . Destiny's faith reminds me and Erwin how much God has seen us through and how he has shown his love along the way . God has provided for us in many ways . Destiny , has been granted a wish to Disney through make a wish at age 2 and now from the love of others is going to get the chance to have yet another wish . Destiny , has been blessed with girl friends that we thought she would never get to have . Sleep overs , make overs and giggles have feel so blessed . The love of her family going out of their way to help and cherish every minute with her . Good friends that have been then through thick and thin !! And a church that has allowed us to contiune to have hope . I could go on talking about the ways God has shown hsi love to us . I lnow he sees things in his ominscience and is doing what is best . No matter what are future holds with battling SMA and watches as our little girl fights to live , no matter how small or big our challenges are I have learned to take everything to God . I know that I truly have a friend in Jesus . And with love , faith , caring of others and HOPE . Our Destiny will conitune to spread her angel wings ...
TodayYesterday , we go some more BIG NEWS !! Our close friend Chantel has went beyound the call of duty !! She has something really "BIG" in the works for our family (but , I can not share the news for about a week) giving her time to complete the last work of it all . So , make sure to check back for upates on this BIG NEWS !!! It really shocked us .. We had a visiter today .. Ms. Belinda came to our house to bring a Destiny a glass fairy and to say a Special Prayer for Destiny . We enjoyed our visit with her so , much ! And Destiny loved her beautiful fairy . We are so , blessed to have so, many caring friends here for us .(Thanks , all of you) , and you all know who you are ! Alot , of the commuinty has now joined in with Destiny's Benefit (it is getting bigger everyday) everywhere you look you see fliers and Destiny's Photo . Destiny , is doing really well , she is having some swallowing problems in the morning (after getting off the Bi-Pap). We will be so , relieved to get to Texas Childern's and see the Specialist . Other than that she is been really cheerful and sassy these days . Full of energy and keeping Mommy on her toes . Each day I look into her eyes , I know how truley blessed we I am !!
TodayWell , Destiny had her first meeting with the State Troopers . It went over really well , they all were so kind ! They came to met her and brought her gifts and discussed some of the details on her Wish . They will be offically granting her wish next week , and they are having the local news and newspaper come . We will be leaving for her trip very soon !! I wish everyone could have seem her face today ! She is just so Happy !! We are so , Blessed to have so many loving friends and family and a wonderful community . We found out yesterday that we will be meeting with the Dyno-Splint guy on next Tuesday . And we will be heading for Texas Childerns to the GI Specialist as soon as we get back from the Wish Trip . We have a pretty relaxing rest of the week planned , lots of school lessons and lots of just enjoying be home . Friday , we have Pt/Ot . So , we will post later when new things occur . We thank everyone for the LOVE , CARING , & PRAYERS .
TodayWe have had a busy and fun fillled weekend . Friday , night was our last night of Church Revival it was really good , although Destiny was really tired and slept in the pew most of the time . Saturday , we had Girl Scouts from 12-3 o'clock . Destiny , had lots of fun being with her little friends . Afterwards , we went to my sister's house for a cookout . Destiny , had a good time with Haley , Hunter and Devon . They played so good together . Sunday , we had church (Destiny's class had their little party for learning all 10 of their commandments . And then we headed to Haley's "2nd" Birthday Party . Destiny , enjoyed watching Haley open all her gifts and she had alot of fun playing with family and friends . After , the party we went for another Cook-out at friends . Destiny , got to play with her friends Mattie and Brianna . On Sunday , we also got the phone call that Destiny , recieved her "WISH" is is going to be getting to go very soon !!! The State Troopers are coming over today for our meeting with all the trip details . She is so , very , very HAPPY !! And can not stop talking about it . Her benefit tickets are doing really well also . We thank all of you that have helped out and that are going to part of this . We will be sure to update after her meeting and let everyone know all the details of her trip . We plan to rest up from our busy weekend today , and enjoy being at home . Make sure to check back with us later .
TodayGosh , can't believe it is already Friday ! The week has really went by fast . We are Thankful though it is already Friday , we hav a Fun filled weekend ahead . Yesterday , Destiny got to go shopping and to have lunch with her Daddy . Today , we went shopping again and had Mommy and Daugther lunch . Then we went to Therpy . Destiny , had PT/OT today . We will be seeing a Dyno-Splint specialist next week (to have Destiny's Splints resized) she will have to wear them at least 3 hours daily for 2 months and then we will go from their to the next step for Bracing . She also we being getting fit for type of bracing for her Toes and a Arch for her Shoes . We did not have ST today , being with what happen on Tuesday , we will no longer have ST till we get into the GI Specialist . We are being sent to a Pedi GI Specialist in Lafayette . And being sent to Texas Childern's Hositpal also (for some other medical stuff) . So , more Dr. apt's and lots of traveling in store for the next several months . We have a busy fun filled weekend ahead so , check back later for more updates . And please keep the Prayers coming !!!
TodayWell , we have some great news .. Destiny's nurse came out yesterday to make new setting to Destiny's Bi-Pap machine . But , instead of making the changes Destiny got a new Bi-Pap machine along with the humitifer that attaches to it . It is wonderul (it is a newer model and you can not even hear it going , unlike the old one ). So , she made the new setting into the new Bi-Pap (we were nervous Destiny would not be able to handle the high settings . Boy , were we wrong ! She slept better than she ever has . We had a scheduled apt. to go to an out of town apt. for X-Rays on her hips and back and to get some new things on her chair . But , we had to reshedule it (because of Destiny being on this Pain med. and having tummy aches) we did not want her traveling such a far way just yet . So , we got PT/OT/ST for this Friday . And we had many calls yesterday with new apt. dates . On April the 5th we will go to Baton Rouge for tests with her Lung Dr. April the 6th Dentist . April 11th we will go to Shreveport for her Hip and Back X-rays and to get her new things added to her chair . And whatever other apt. come up . We have a very busy March and April , our calender is getting full . We have alot of celebrations and fun coming up . So , make sure to keep coming back and checking in on want Destiny is up to . She is the love of our life and we love sharing our jornery with her , with you all. Love and Prayers to All...
TodayWOW ! Where has these last couple of days went . And where do I start ? It has been a very busy week thus far , we are enjoying our Church Revival every night . On Monday we stayed home most of the day , and had alot of Schooling (Destiny is getting so, good at things & doing wonderful with being Homeschooled. Yesterday , she was suppose to have ST/PT/OT but , we had to rush her in to the Dr. she was having some severe pain in her stomach area and crying unstoppable tears . We were in the Dr. office 3 hours they ran several tests on her to find out what was going on . We got all the tests results back by yesterday evening (all but one and that one will come back tomm. evening) . The Dr. expalined to us that Destiny is having some problems with her stomach due to needing a G-tube , he put her on a strong pain med. and he agrees with her other Specialist about a G-Tube , but he is checking into some G-tube specialist out of town (he feels the GI Dr.'s hear know nothing about SMA and Destiny needs to see one that is very knowleadgeable of her contidtion . (We are happy about that) & (We feel alot more releived that Destiny's Dr. is taking such good care of her). So , hopefully we will be getting that apt. with the GI Dr. soon ! Today , our Home Health Care nurse will be coming out to make the changes to Destiny's Bi-Pap(pray that Destiny can tolertate the high settings}. We got the "Raffle Tickets" dropped off this morning (they are having a Raffle also for Destiny) . They got the tickets done in guess what color (PINK) !! Her favortie color . She was so , happy about that . LOL Tickets will be all over our community and we have 50 of them to sell ourselves ! We will get busy with that today . The Drawing/Benefit will be May 15th !! They tried to plan it as close to her 6th Bday as they could . My mothers results came back Cancer free , we are so happy !! God , contiunes to hear and answer our prayers ! And a BIG CONGRALATIONS to Lisa (we are so , happy for you) !! And GUESS WHAT ... Miss . Destiny has yet another tooth loose ! This will be her third one !! She found it loose this morning , it is just loose enough it till it is loose (so , it may be awhile before time for it to come out) . But , she was thrilled !! LOL
TodayWe have some suprising news !!! First of all Destiny's Benefit is in the process of finishing up tickets and all , to get it under way . (Our Firemen are Big time Hero's) !! We also , got news Saturday night that Destiny will be getting another Wish Granted through the Fireman and Policemen of our town . They had to know by 9 this morning what her Wish is . So , Destiny had her little interview this morning before church she said a "DISNEY CRUISE" !!!! She is so , happy !! We do not know any details yet of when this will take place . We will be sure to keep you all updated though . We have had a great weekend ! And Destiny , is holding her own she is doing good !! Friday night we took her to our town's new McDonald's (Des. said it was Space Age and was so , Cool) ! We starting delivering cookies Friday night , we had several boxes shorted for our troop so we still have alot to finish getting out Monday and Tuesday . Then we went to visit Baby Wyatt . Saturday , we got to bring Destiny to the Shriners Bass Torunment . Her Daddy & alot of our friends and family were in it also (in her honor). It was lots of fun !! Saturday , night we had friends over for games and pizza . Today , our church started our Revival (it was awesome) ! We will have it every night this week . We are looking forward to that . We are having a Big Fish Fry tonight , with family . Destiny , is looking forward to playing with Haley . I have some special prayers that need to go out , My Mom had sugery last Thursday afternoon , and is healing well . Although , we are still waiting on the results of some tests she had (we should know Monday) . Our little friends Elizabeth and Lindsey are sick we prayer that get well soon ! And please keep Destiny in your prayers we will be going on the 10th for lots of X-Rays at her out of town apt. and we will be finding out this week sometime her GI apt. And a Special Thanks for our SMA Braclets Ms.Susan . They are both so , beautiful !! We keep finding Rainbow in each day , We will never give up Hope for our future with Destiny . We hope you all know how much you all giving us your caring thoughts , prayers, and love means to us .
TodayWe have made it back home today . It was a very long week it seemed . We enjoyed getting away , even though it was for a DR.'s visit . Destiny , apt. went o.k. She had a very long a intense exam performed about her Swallowing . Destiny's Dr. feels it is time to get an opionion for a GI Dr. (about her G-Tube). So , we will be getting that scheduled this coming week . He also made some new orders for her ST . Destiny , will go back in 3 months for another exam about her Swallowing & to see how her montior is working out . Destiny , also got her Montior that she will have to wear , it will alarm if she Stops Breathing . We hate that it has came to this , but also in a way relieved that she will be montiored better now . We also got to have a meeting with our Wheelchair guy he , just happened to be in the Monore area . He is making some changes to Destiny's new chair and talked to us about some lifts for the type of new vechicle we are looking into . He will be making all the new changes to Destiny's chair next week . We are very happy to be back home . And we are looking forward to having a nice weekend . Hope everyone also has a great one . Please , check back with us later to see what is new with Destiny . We apprecaite all the love and prayers you all contiune to give to our Baby .
TodayWell , we are headed off to Destiny's apt. Her apt. is Tuesday . We do not know yet when we will be coming back home . We plan to enjoy a couple of days away and get to visit with family . Haley , we also be joining us on our trip . It should be alot of fun entertaining to little girls . They will have a blast I am sure . Wish us luck on the apt. we are a little nervous but , just taking things one day at a time and leaving it all in God's hands . I will be sure to update as soon as we get back in town .
TodayWe almosthad to make a 911 call to our home tonight . Destiny , got choked and stopped breathing . Her O2 fell and she was turning black in her face . Thank God Erwin was able to get her out of her chair fast enough and start trying to help her . She finally got in all up and started throwing up really bad afterwards . I have called her Dr. and we will be having some more tests ran this week while out of town for her scheduled apt. Please pray for our baby . This is getting so hard ! She and I both cried . I hate what this SMA is doing to her body .
TodayDestiny , had ST/OT & PT today . She did "great" with her ST and we have new devices to use during ST both here at home and during ST . Soon as we get back in town , her OT/PT therpist is setting us an apt. up to have Destiny fitted for a new bath seat , being Destiny's head control is very limited now . Also , for a the best type of lift for Destiny's new chair for a new car . She is doing really good and getting anxious for a busy and fun weekend ahead .
TodayI just had to share this with everyone . My Princess is just the center of my world and everything she does seems so cute . But , tonight she was just to darn cute !! She has this little green blanket that has been with her since she was a newborn to has been took to every Dr. apt . and PICU stay we have been through . And she just loves it . Well , now that it on longer covers her (because she is just growing like a weed). She is finding new uses for her Blanket . And tonight , she tied it around her neck and left it hang from the back of her chair (she was zooming around as Super-girl). Well , she did that for several hours then came out of her room without it I said "hey Super-girl". She said "Mom" do you see my magic cape . I replied well no she said ok then with the cape it's Supergirl without it is just Good girl . She is a mess !!! The little things are our jewels , I hold everyone of these moments very close to my heart !
TodayDestiny , will be in the "Monroe newspaper" Thursday !! Our family had an interview today for the MDA Shramrock fundraiser . Both the interview and Destiny's picture will be in the paper . We are so , honored to have been chosen to do this . We are looking forward to all the things to come !!
TodayDestiny , has been in such a Wonderful , Sweet and Loving mood these last 2 days . Every morning she ask for us to lay in bed and snuggle before we get up . Then once she is up , she is so smiley and happy all day ! I am sure enjoying this all . Being usually she is so , independent . So , Thankful she is over that nasty cold . Now , we just have to get that ole' foot well . She had her Girl Scout meeting tonight , I love seeing her be around all those little girls . Everyone wants to be her partner . We have 5 girls total in our Troop and tonight three of those girls paired with Destiny . She always seems to light up the room and be MISS DIVA anywhere she goes . I am so , thankful she is so , LOVED ! And that she is no longer shy , she is turning out to be very out going like her Mommy . We did not have her Therapies today , the will be this Friday . So , I will be sure to update as new things happen til then everyone love your babies like there is no tomorrow !! And try and find all the good in each day !! Love and Blessing to Everyone !!!
TodayWe learned on Sunday that yet another one of our SMA friends earned his wings . Baby Jacob is now running in Heaven ! Special Prayers for Angela and Alyssa (Jacob's Mom & Big Sister) & all of the Trick family during this time . We pray that one day we will have our cure for SMA .
TodayWhat a few days it has been .. On Friday afternoon Destiny got a visit from The Cheif of Firemen's Wife . She came by to get some photos of Destiny and discuss the benefit the Firemen of our town are having in Destiny's Honor !! WOW !!! We were so , shocked and so very thankful !! I will post all the details when I know more on it . Then Friday night Destiny had her Pizza Party with Sleep Over . She had so , much fun ! I thought she surely needed a fun night after her being sick all week . (Thankfully she is now all better with the cold). But , Destiny hurt her right foot really bad around 9 PM and was in pain till at 12PM with it . Today , started out very early with her MDA Stride & Ride Event . She had so , much fun !!! And of course as always was everyones lit' angel !! We had a Blast and hopefully one day by having all these events we will have our cure !! So , about her little foot .. We got her into the ER right after her event , where is got several X-rays ; she has a severe Sprained ankle . She will have to wear a Ace Bandage for about 7 days and we will go in on Monday for another X-ray . Poor thing , it seems she has to go through so much ! But , is is our rough lit' one and she just goes on with the program !(LOL) Soon as we got out of ER we had to go to her Girl Scouts Program (that she would not let us miss) LOL! It went great and she had a good time ! Another Badge earned ! Yipee !! We plan to take it easy tonight and Sunday and be lazy and rest up ! Destiny , is such a blessing in my life ! I pray that God contiunes to Give us many more days together sharing wonderful memories , laughter and lots of HOPE for any other new day ...
TodayDestiny , is in a much better mood today ! Thank Goodness these med.'s are starting to work . She is showing signs of getting well . So , we are keeping our fingers crossed !! On Saturday , morning she will be in the 2005' MDA Stride & Ride here in town. We are so , proud and honored that she is Goodwill Ambassored . She is really exicted about it ! Then Saturday evening she has her Girl Scouts Program . We want to thank all of our team members that chose to be a part of Destiny's team for the walk . It means so , much to us that Destiny means so , much to you all !!! We love you guys !!
TodayWhat a day ! Destiny's , lung apt. was for 1:00 and we did not get out of there till almost 5:00 . It was a very long day for her . We had so , much to go over & discuss . First of all Destiny had her Pulmonary function test (results were not so good) she is really , really weak} . Her lung Dr. made some changes to some things . He is getting some different setting on her Bi-Pap to IPAP + 10 and EZ-PAP to spontoneous flow . She also is now on a Inhaler 4 to 6 times daily along with her regular BT's & Vest when needed . Destiny , is being sent to Baton Rouge to have some MIP/MEP testing performed . And another Swallow Study performed in Baton Rouge also . We will be getting the apt. date by Monday . Along , with all of todays finding at her apt. Destiny , is still running a fever , it is now low grade but yet still enough to make her feel tired , weak and just all around yucky !! She fighting really hard to feel better . We are trying to let all this medical stuff soak in but , not get the best of us . We have to keep being happy , so we do not miss a second of our baby girls preciuos life !
TodayWell , we just got in from Destiny's Dr. apt . She now weighs 53.8 lb.s and over 4 foot tall (she sure has a set of legs on her ) ! She has a severe cold (normal people would be able to fight off within 2 says , but because of her resp. weakness hers is here to stay for about 10 days the Dr. said ) We have 6 days down 4 to go if that is so ! . So , she is to have her BT's every 2 hours , and is on 2 new intense medicines by mouth untill she is well. She still is running a temp . today . We also got news from the Dr. today , we are being sent to a specialist in March , about a feeding tube . The Dr. did not want her to got to her therpies today being she is sick , he said it would make her weaker . So , we missed today's but we will back on regular schedule soon as she is well . Destiny , has a Pumlongist apt. on Wednesday afternoon also . It is an regular scheduled check up , lung function test , and to go over her Sleep Study also . I will be updating with all the details on this apt. So , check back with us tomm. afternoon for more updates ! We apprecaite all the prayers and love you all send our baby girl it means the world to us to know she has touched so , many lives !!!
TodayHAPPY VALENTINES DAY !! Boy does today bring back memories of last years Valentines . Destiny , was in PICU fighting Phemoinia and having a really hard time with her O2 . Destiny , is still sick today , running a high fever and crying at the drop the a hat . She just does not feel good at all . We have called the Dr. and we will be going in Tuesday morning . We are trying to make the best of today ! Please , keep her in your prayers and thoughts . We pray she gets over this soon ! I will be updating tomm . after her with all the Dr. apt. details . Thanks , hubby for the wonderful Valentines present "I LOVE IT" !
TodayOur little Destiny is still sick . She again today ran a fever . Soon , as we get it broke it spikes right back up . She has been a Mommy's baby all day and just wants to be held . We had friends and family come over today , even though she was sick . They could not go without seeing their baby girl and getting her Valentines to her . Thanks , so much guys we love you all . It means so much to have you all in our lives , and it sure made Destiny smile to see you all ! You all are amazing to be here for us through it all ...
TodayToday , has been a very emotional day . Destiny , is very sick !! She is now running a higher fever , coughing , rattling , and feeling worse than yesterday . We have increased her BT's to every 2 hours , using the vest , and Bi-Pap during the day time too. Trying to keep her comfortable & letting her just rest . I played our song for her "The Voice Within" , it always makes her smile . I have to keep Hope alive for her . And keep her smiling and happy when she gets sick like this she gets down and she starts shutting down. She has been doing so , very lately so we are taking her being sick hard . We know how Destiny is with colds and where they lead . We are going to everything possible to keep her out of PICU . Please , keep Destiny in your prayers !!
TodayWell , Destiny has caught her first cold the winter ! She is running a low grade temp. , sneezing & runny nose . Thankful , no coughing as of yet . And her appetite is still good . Her Dr. increased her BT's , gave her an antibotic that is a antihistamine with decongestant , and we have got the Humidifier running 24-7 . She has been really tired and fussy today . But , is being big and taking her medicine even though she does not like the taste . I have kept her in today and tonight and we will do the same tomm. , she has a Valentine Party at church to go to tomm. night . I sure hope she feels up to it being she is so looking forward to it . Please keep Destiny in your thoughts and prayers !
TodayDestiny , had a very long ST,PT&OT today . We had it all from 1:30 to 3:30 . Her first ST went ok , Destiny is having alot of problems and the ST and I are going to do all we can do to help Destiny out , but we also know her condition will only get worse . Destiny , to only drink from a straw now (her OT told us today , to not let her use anything but a straw while drinking anything liquid} this including soups , and cereal milk. We will be going to ST once every week . And I have to give her ST twice a day here at home . They are ordering us some , mirrors and devices that we will have to use at home . Destiny , will also have a Swallow Study performed every six months to stay on top of her condition . In PT/OT Destiny got very tired very fast , today . She is having some problems both of her ring fingers and they worked hard with them today . She also is having some problems with her left foot the PT is calling in a Specialist to evaluate the foot and the range the foot gets , and she will being fitting Destiny for a Special brace that allows range to wear at all times . Destiny's , right foot is doing great we are getting 90 degree range out of it . She may also be getting some brace type things to wear with her shoes to help with her toes . Destiny , had a long rough day so , we are going with some friends to treat her to Chinese and cheer her up !! On the good part of today , Destiny went and ate lunch with her Daddy and went and saw her Ma-Maw at work . And Mommy is coping with it all ok. We are just taking it one day at a time ! Plus , Mommy got a makeover last night and new furniture today . Thanks , sweety you are a wonderful Hubby !!
TodayWe have received Destiny's Sleep Study results this morning . Her O2 stayed at 97.3 (which is great for her). Her pressure will be set at 7/4 on her Bi-Pap and she will recieve a new type of mask , a chin guard , and a humitfer to add onto her Bi-Pap . She again had some problems with Resp. distress and stopped breathing 3 times during the tests . So , she will also be getting a monitor to wear while sleeping and that will alarm if she has more of these spells . We will have to go back one month from now , and then yearly after that (to have Sleep Studies performed . Yesterday , she ran a little fever and has a slight fever again today , she is now cutting both of her bottom teeth she lost , so I think that is what the fever is from . Blessing and
TodayBoy , How I wish everyone could have seen Destiny last night at the Super Bowl Party . First of all she ate Crawfish till I thought she was goin got be sick (LOL). She danced around and had so , much fun with her friends . We got to missing her at one point of the night and finally found her , at the table eating Choc. Cake , needless to say she had a fork but , no plate just going to town eating from the whole cake it self !(LOL) It was so nice for both Erwin & I to cut loose and have some fun too. Everyone , was happy to see us having a good time , they all kept saying you all needed this ! I guess we did we both laughed more than we have in a long time . We danced and everyone had their rounds with the karokee singing . It was a "BLAST" !!
TodayWhat a "GREAT" , last several days in has been !! Starting out with Friday night , we had a big shrimp with with a few of our friends . Baby Wyatt was there too Destiny just held him and loved on him . Destiny loves shrimp and boy did she eat .. Friday , night Destiny had some severe weakness in her neck . She could not sit up or hold her head up . It made us all nervous , but with a good nights sleep she was better on Saturday . On Saturday we went and saw Haley . Destiny had a good time with her as always . Then Saturday evening we went to a cookout at a friends house , Destiny got to love on the Madsion and play with Brianna . On , Sunday we had church at church we are getting prepared for our big Valentines Day party next Saturday night , Destiny is looking forward to that . And now we are off to do a little shopping at Wal-Mart and then off to a big Super Bowl / Mardi Gras / B-day party/ Huge Crawfish boil at our neighbors house there will a whole lot of people there and lots of karokee singing . Destiny , is sure to have a blast ! I will be sure to take "lots" of photos to share with everyone . We hope that everyone has had a great weekend and has an even better week ahead . Check back with us later in the week to see what Destiny is up to. We hopefully will be getting her Sleep Study results this week and she also will be starting her ST this Thursday . Other than that we hope to have a nice relaxing week full of homeschool lessons and fun being at home .
TodayWe also got a call Destiny will begin ST this Thursday . Wish us luck !
TodayWe are back home now , from the Sleep Study last night . We are all tired ! It was a very long night . Destiny , had several complications during the test which made for many disturbances . We should have the results by Tuesday of next week . We will be trying hard not to dwell on the thought of what it may tell . Destiny , was again hooked to many things and monitors and she also had a EEG performed during the test . They also had to come in about 3 a.m. and put a chin guard on her to wear . This will possible be something she will have to wear now during sleep . Destiny , as always was a very big girl she seems to know it all is to help her , I think she has a sense of all that is going on and somewhat understands her illness . She amazes me ! I what to thank everyone who continues to pray for Destiny . And special thanks to , Stefanie , Theron & Wyatt for coming over Wednesday it always helps to have you all over to laugh with & keep our minds off things . And to Heidi & Greta , and Ma-Maw and Pa-Paw for coming over on Friday . Destiny loves her make up case with all the make up , hair stuff , and candy Greta !! We are thinking about you Haley and so , happy that your surgery went good we will be over to see you this weekend ! And thanks for all the emails and calls yesterday and today , everyone is to kind . We will continue to take all the bad news and good news as it comes .. Destiny has come too far to give up now !!! Blessing for a great weekend to All ..
TodayDestiny , had PT/OT yesterday she did really well with it . They are still working with her fingers , hands and feet . It is getting harder for Destiny to lift her cups and write , she is so weak now . But , as always she doesn't let a little weakness hold her back , she continues to try !! The ST is still looking over Destiny's tests results , we will be hearing from her sometime this week with her opinion on Destiny's needs {G-tube or ST} . We go for Destiny's Bi-Pap Sleep Study tomm. night we all getting anxious for it to be over with . Although , also very nervous what the results will show . Please keep Destiny in your thoughts and prayers , it is a simple test but , the outcome is what is scary to us . We want to Thank all of you leaving all the wonderful post , emails and phone calls . It means so , much !!!
TodayWhat a Big Girl ... Destiny , took at nap today {the first nap in along time } & {also while wearing her Bi-Pap}. The Dr.'s suggested her to have at least one nap a day while wearing her Bi-Pap . And so far , so good !
TodayDestiny , is doing great today ! She had a good nights rest for with no problems last night . We made some changes by adding O2 in with her Bi-Pap and boy it made a difference . We plan to keep things like that till Thursday nights Sleep Study . She is in a great mood today and she did wonderful with her schooling today , she has learned how to add and subract numbers now ! Hope everyone has a great start to a new week .
TodayLast night was the third night in a row , Destiny has awoke having trouble breathing . It is scaring the mess out of Erwin and I . She is getting to weak to breath properly with the setting that her Bi-Pap is on. We will be so , glad when she has this next Sleep Study so , we can get the setting changed . At night , she seems to be fighting to get in good deep breaths . Erwin and I have made a habit of keeping our hands across her chest , soon as we get our montior we will all be able to sleep a little better . It is getting hard thought to answer her many questions , she ask why does it hurt to breath Mommy or Mommy and Daddy I am scared to go to sleep . All the medical things and machines aer a breeze compared to having to look it your baby's eyes and try to give her answers. God , has answered so , many of our prayers and we know he will contiune to do so , and we know he will also contiune to send his special angels to watch over Destiny . Together with God's love and guidance we will defeat SMA ! On a lighter side the nasty pink eye & fever is all gone ! We are so , happy about that . And everything can get back to normal here . All the problems we are facing and will face in the future will not stop us , for giving Destiny the most normal life as possible .
TodayWell , seems soon as I update plans always change !! I just recieved a call from Destiny's PICU Dr. her Sleep Study has been changed due to finding another specialist that can be here sooner . Destiny , will now be having it performed on Feb. 3rd !!! The Dr. felt things did not need to be put off.
TodayDestiny , had her ENT exam this morning , the apt. went very well ! Her left tonsil is extremly large but , she will not be having sugery due to the risk of it being , she has SMA . He said on normal child he would have it taken out but , he doesn't want to do so with Destiny . He has set up her Sleep Study for the night of Feb. 8th . He had hoped to get it sooner , but we have to have the PICU Dr. present and also a Dr. from N.O. present . This is the first child with Destiny's condition they have performed a Sleep Study with a Bi-Pap on . We will be anxiuosly awaiting this study , so we can see what her O2 and things are doing while having the Bi-Pap on . Destiny's pink eye is still there , but looking better everyday . Yesterday , she ran fever and was real whiny all evening . She just wants to be held and loved on , so Mommy is taking advantage of that ! Please , keep Destiny in your thoughts and prayers ! We have alot going on with our family at the moment my little neice will be having sugery on Feb. 4th , & my brother is very sick with Bronctics and was rushed to the ER yesterday . On a lighter side I want to say Welcome to the World , to a new addition in our family little Pierre Romero was born we were told Mommy & Baby are doing fine ! And Way to go to our good friend , Johnthan Murral on making it to Amercian Idol Hollywood !! We love and apprecaite all of our family and friends that contiune to stick beside us . Your love and devotion to us and Destiny is amazing !!
TodayPlans have changed ! Destiny's , Primary Dr. and PICU Dr. called this evening and he feels Destiny can't not wait till Feb . 9th . So, we are being sent to a ENT Doctor on Thursday the 27th for a exam , then they will set up her Sleep Study . This makes us both very nervous being they are putting a rush on things , but very releived we may get answers for what we need to do for Destiny .
TodayWe have made it back home once again . Since , yesterday morning we have been really hopping . We are having a very rough time soaking everything that is going on in . Destiny's Dr. was very wonderful and compassionate with explaining all the results with us . First , the Swallowing Study : Destiny , wa DX: with Dysphagia and will start Thermal Tactile Stimulation & Oral Desansitization therapies. If these do not manage her problems we will have to go forward with a feeding tude . Second , the Sleep Study : It reported that Destiny's O2 level is at 81 {dangerous level} while sleeping , she awoke 25 times with resp. distress , and stop breathing "6" times . She is also staying in the dangerous stage of sleep most of the night . He said her muscles are fighting very hard to keep her body going and breathing . He feels that she will have to be watched very closely from now on , and that her weakness is progressing fast now . He sent us back home , without the second study performed with her Bi-Pap on , he sent us straight to her local Dr. this morning to schedule a Sleep Study here with our local PICU staff but , she is at to great risk and they have never performed this study with a child with these problems , so the Dr.'s called in a specialist to performed it . It will be "Feb.9th" back in Monroe . We will have this tests done and then recieve a Montior that she will have to wear at all times while sleeping , to alarm when she stops breathing . Her Bi-Pap will have to be increased and 2 liters of O2 will have to be bleed in . This second test will help her Dr.'s know what next steps we will have to make. We are having a very hard time accecpting everything , most of the night and today we have been in tears our hearts are in a million pieces . Both Erwin and I are trying to stay strong , although it is a very hard thing to do . It is so , hard to know that you are watching your baby slowly lose all the strength she has & each night you tuck her in you pray that it is not the last . We thought she was doing so , good . And we did not want to have to face this all yet . On top of all that , yesterday evening while coming home Destiny's eye started giving her so , problems . By this morning it was soild pink , pouring green stuff out , and swallow shut . At this mornings apt . about the Sleep Study we had her Dr. look at it , she has a very contagoius case of Pink Eye and was given Vigamox drops to use 4 times a day . She is also , running a fever and can not be around anyone , till it is complety gone . We have had so , many friend & family ask what can they do , just please keep Destiny in your prayers and know that we still need our loving and wonderful support system to keep Erwin and I sane . This is the most hardest thing yet we are having to go through . And we hope that everytime you see Destiny's smiling face rather in person or in a photo you cherish every minute of life , the way she does .
TodayWell , the weekend is just about come and gone again . We have a had a really good one though . Destiny , won a prize today in Sunday School , for knowing her first commandment . I was so , very proud of her ! As soon as our her class learns 5 we plan to have a party for them and when they learn all 10 we will have a movie / party night . I got some , much needed Mommy time today . Me and 2 of my girlfriends have started tanning Sunday , Tuesday , & Thursday's and Monday , Wednesday & Friday's we will be going to the gym for an hour at night . It is nice to be able to have some me time and relax and get so off the tension out . Destiny , gets to have playdates when Mommy is out for that hour every evening too , so she loves that ! We are getting packed and ready for our apt . tomm . morning in Monroe and Destiny will have yet another Sleep Study on Monday night . We plan to go out to eat and see family in between the two things to keep our mind off of things as much as we can . We are praying that it all goes well . We will be sure to update when we get back home . Thanks , again for all the prayers and support you all give us , this jorney has been a tough one but it helps knowing Destiny is so , loved !!
TodayDestiny , had her first ever boy-girl B-Day party tonight . It was so , cute watching her dance around . All the kids were so , sweet to her and included her in everything ! Destiny , sure is turning into a little social butterfly . Always the center of attention ! She is changing so , much and don't have Mommy around so much . It was great too , for me to have a girls night with the girlfriends . We had just as much fun as the kiddos "LOL".
TodayIt was so awesome seeing Destiny in her new chair today , it was so nice to have one with all the extras it really came in handy more than we relized it would . Destiny , loves it too !!! That is the most important thing . But this one , is alot bigger so , we will now start looking into getting a different car . We need a better way to carry this car around than the last one . Destiny , said get a PINK convertible {her dream car} & just tie her chair with a rope and pull it ! LOL . {Mommy , silly clown}. It was nice to get her and enjoy a Girls Day , sometimes just getting out of the house helps with all the stress we are under . We are looking forward to a nice weekend and we hope that everyone has a good one as well .
TodayWOW ! Destiny . got a BIG surprise tonight she got new cool Princess wheelchair. She is so , very proud of it . It goes alot faster 8 miles where her old one went 4 . It reclines all the way back , for those weak days and it is a beautiful purple seat with pink Princess wording and her frame is hot pink . It fits her to the tee . We donated her first chair to MDA , in hopes that another little girl will get lots of miles out of it just as Destiny did . Mommy , of course cried tears of happiness knowing her baby is getting so , big and tears of saddness as her first chair left , but I sure got lots of photos and lots of wonderful memories in my heart of Destiny in her first chair to cherish forever . We have had a house full tonight and lots of laughs watching Destiny break in her new ride !!
TodayWell , Destiny's specialist called today with the results from her tests . Her Swallowing came back just as we were told by the ST that performed it , and the Sleep Study came back abnormal . She her oxygen is decrease at night and we have to be back in Monroe for an apt. to discuss all the results in detail with her Dr. on both of the tests , we were told to be prepared to stay , we will have yet another Sleep Study performed , they are trying to get it scheduled for Monday night . During this one she will be wearing her Bi-Pap or C-Pap . We were hoping for good news , but instead it all came back the way we did not want it to go . We are holding on to a prayer now . Please , everyone just say a prayer that Destiny , will be ok and not have to go through to much . We are very upset and basket cases at the moment . We want to thank everyone that has been there for us this past week , we need you more now than ever , so keep the prayers going for our baby !!
TodayWe have had a much better day today . Destiny , was not as weak as yesterday , she woke -up glowing and happy . We were up at the hostipal most of the day with our new little baby to love , my friend had her little baby girl at 10:35 this morning . They asked for Destiny to name her , she chose "Madsion Kate" . She is a precious 7.13 bundle of joy . Then this evening Destiny had PT/OT Destiny did alot of work with her hands today , hopefully next week Destiny will be alot stronger and will be able to have more PT , we also were able to discuss Destiny's problems with the ST . Soon as we get our copy for the test results and an order we will have Destiny's evalution . We should be hearing something tomm. hopefully no later than Friday . We will have the results in on everything . We plan to stay in tomm . rest , we have had a busy last couple of days .
TodayWhat a day , it has been a very rough one . Destiny , woke up this morning with severe weakness in her neck area . While getting her dressed she started crying saying how tired she was {and she has only been up 2 hours} then while brushing her hair she could not keep her head up long with out her whole upper body falling over . By mid-day she still was having signs for weakness and had some trouble sitting in her carseat . Today , was one of those days in all hit home and I have been a wreck most of the day . I hate this diease and what it is doing to my little girl . I have cried on the spot at least 6 times today . I can not wait till the end of the week when Destiny has her new chair with better head control and a reclining system , she really could have used it today . Although , today was rough Destiny tired hard to keep that beautiful big smile on her face and was very sweet and loving all day . She is such a blessing and my greatest joy !! Each day will always being worry and stress but , as long as she is here in our arms it all will be ok .
TodayDestiny , is feeling good today . She had her first night of good rest last night . She slept like a angel . We have a very busy week ahead of us , Monday we may have a newa baby to welcom in our family our friend is being enduced Monday morning . Tuesday we have PT/OT . Wednesday we should be hearing from Destiny Doctor about the tests we had done . Thursday we will be going to Shreveport for more Hip & Spine X-Rays . And Friday we should be getting Destiny's new powerchair . So , keep checking in with us all week we are sure to have lots of updates daily . We hope everyone has a nice weekend a a great start to a new week .
TodayWe have made it back home from Destiny's tests . On Wednesday night Destiny had a EEG , and a sleep study . Along with being hooked up to all the things for the Sleep Study she also had a O2 flow , monitor & a Pulse Ox , & Heart monitor . She was also video taped during the whole tests . The Tech told us that she is having some defintily having some problems during sleep . But , she could not give us any info . the Doctor will have to give us the results . This morning Destiny went for her MRI , but they were unable to finish performing it due to her getting a case of Tremors . Depending on her Swallow Study results & Sleep Study we may have to redo another MRI , but she will have to be put to sleep . So , we are just keeping our fingers crossed . Then she had her Swallow Study performed , the ST along with the Specialist that performed her tests found that she is having severe Delayed Swallowing due to her muscles now being very weak , and she is having aspiration . They said it is very highly possible that Destiny's Doctor will deciede that she needs a feeding tube . Her swallowing ability is about at a 30-40% mark where most childern will swallowing problems rage at 60-70% the ST and Doctor explained to us . That will Destiny's DX: for SMA , she will contiune to get weaker in the Swallowing areas , just like the rest of her body . We also found out that she has a severe case of Reflux and that hopefully her medicine for that will so , what help out . She was also DX: with a severe case of a Texture problem , due to her weakness this two can not be changed or overcome due to her weakness , but hopefully can be managed . We recieved orders today to start ST weekly along with , some ingraded texture help . ST will not improve things , this will only help out and teach us how to help with all her swallowing problems . We are to call on the coming up Wednesday to set up an apt. date to go back out of town to get all the results . It has been a very hetic and emotional last two , but we are so , thankful Destiny was a trooper she was so , "BIG & "BRAVE"!! We will be sitting on Pins and Needles awaiting our apt. for all the test results .
TodayToday , has been a very busy day . Which helped keep me for breaking down . Both Erwin and I are very scared , for what may lay ahead . But , we are leaving in in God's hands . We are trying to be strong for Destiny . I took the day just to enjoy having a girls day with Destiny . We enjoyed our visit with Chantel , Brianna & Ms. Linda today thanks for the gifts for Destiny she will enjoy the Polly's and loves all her "5"TY Boopers. Lindsay , we hate to hear that you had complications with the tests today , we pray that you will get better soon .I hate that you are in the hositpal . Lisa , girl hang in there ! Destiny , had her girl scout meeting tonight , she is now selling cookies !! So , everyone start counting their pennies . Destiny's , goal is 100 boxes . Being we are leaving tomm. evening this will be our last update till we are back in town , We pray for no complications and good news on the results . Please , say a prayer for Destiny .
TodayBoth Destiny & Mommy had a rough night last night . Destiny , was restless all night and I could not sleep . I am getting very nervous about Wednesday hostipal stay . I am going to try and stay buys today and tomm. to keep my mind for wondering and worring . I pray that everything will go smoothly and we will get some answers concerning all of Destiny's problems . I want to thank Erwin , for being the most wonderful husand & daddy . You are always there to pick up the pieces for me . I love you and Destiny adores you too . You are our rock !
TodayWhat a very emotional day , I found out early this morning our little friend Elizabeth crashed while coming home from Stanford and was rushed by ambulance to near Hostipal in Chicago. Lit' Princess we are praying for you . Jeanna , call me if you need me any hour of the day or night , give our lit' Princess kisses . And Destiny little friend Lindsay will be going in on the 11th for tests . Sweety we pray that all will go fine . Keep Smiling , Destiny looks up to you so , much . Lisa , girl we will make it through these tests . I am praying that you and Rob finds the strength to to make it through it all this coming week .
TodayWe have made it back from Destiny's out of town apt. Destiny's Doctor found signs of problems and many concerns . This week has been an emotional "train wreck" ! Destiny , was DX: with Nocturnal Hypoxemia . We will be leaving on on Jan. 12th to have Destiny admitted into an out of town hostipal for another sleep study , an invasive swallow study , and a MRI. The Doctor said Destiny has a 25 % chance of coming out of being put to sleep , for these tests so , we will have to have her go through them all awake . I pray that it all goes smoothly with little pain for Destiny . Depending on these tests results Destiny's Doctor informed me that we may have to discuss feeding tube and trach . Also , Destiny will be getting a belt to wear at night with a monitor that will alarm when Destiny stops breathing . Also , depending on the tests , Destiny may have to be on O2 at all times and have it bleed in her Bi-Pap at while sleeping . I feel my heart is being ripped out !! I pray that God will contiune to give both Erwin and I strength to face all that is coming our way . I am grateful Erwin is taking off , to be with us and Destiny's Maw-Maw & Nay-Nay will also be making the trip with us for support . We also have a great support system in Monroe to help us out if needed . We don not know how long we will be up there , I will contiune to update till Wednesday . So , keep checking back with us . And just please say a little prayer for our baby !!
TodayWell , we are starting off the New Year with more apt.s and test . Destiny , has her first apt. for the New Year this week . This apt. is for her swallowing / choking problems . We are praying that all goes smoothly and we only get good news !! We are leaving on Monday morning and we will be out of town till Jan. 6th or 7th . Please , keep Destiny in your thoughts and prayers during this trip . We will be sure to update everyone as soon as , we get back in town. Blessing for a good week for everyone .
TodayWOW ! It is now 2005' . How time flies . We had a great New Years with lots of fireworks , which Destiny loved ! We had our Christmas / New Years with family from Monroe today . Thanks, you guys for coming down {we could not had got all those gifts in our car} LOL. We loved having you all down and thanks for all the great gifts . This evening Destiny did not feel to well , she is having some bowel/bladder trouble , we had some new medicine called in though and we were thankfully able to get it tonight before the pharmacy closed . She is already feeling some , better and hopefully tomm. she will feel completly well . Today , was a very weak today with slight tremors all day . We plan to take it easy tomm. and let her rest up .
Today"Happy News Year" ! We have made our New Years plans which include lots of fireworks for Destiny . { We would not have it any other way } Then on Saturday we have family coming down from Monroe , for a late Christmas / New Years . Destiny , is looking forward to that . Lots more gifts to unwrap ! Our prayer for the New Year is Destiny stays as healthly as possible & each day we contiune to be blessed with her in our arms . And may God Bless all of our friends and family that contiune to stick by us through thick and thin . We love you !! And thanks , " Lisa & Lindsey " , it was good to read your post about the family matters . It helps to know you all are going through the same thing . Our girls are not missing anything !! And they are better off with out that negative family in their lives . May God Bless & keep you all healthly and happy through out all of 2005' & again thanks loving our little girl .
TodayWhat exiciting news we have gotten today !! Destiny , has been chosen as "MDA 2005' Ark-La-Miss Goodwill Ambassador" . This will be Destiny's third year straight winning this title !! Way to go Baby-Girl !! Mommy and Daddy are so , proud of you . Can not wait for all the fun- filled events you will do this year . You are a "True Hero"!! We love ya , Ms. Belinda , Johnthan & Ms. Lydia .
TodayWhew ! Well , we got all our Christmas tree & deco.'s put away today . This is the last week of break from homeschool , so I wanted to get the house back to normal . That way Destiny and I could get to do fun things & play with all her new toys ; besides cleaning . Destiny , did not get to bed till after 11 last night she was so , hyped up . So , we let her sleep in today and skip church . And boy did she sleep !! Erwin and I keep talking all day today about how great our Christmas was this year . Destiny , of course cut in with her humor ! She said " Yeah it was the best , but know what Santa will be back in about 300 and something days ". Little rotten girly !! She just to start for her pants !! She always keeps us on our toes !! I pray that this winter brings us more wonderful moments with no hostipal stays . We are trying really hard to to keep her well . Even though it means being home more , and not going so much or being picky to what she does or whom she gets around . I guess the fear of the unknown will always be there and we will never be out of the woods . Now , our goal is making it to Valentines Day with no PICU visits . Valentines Day last year , she was in PICU , we will just take one day at a time and contuine to set small goals to work towards. Destiny , always makes us think about things , and one of the things she said during Christmas was "well Jesus heard my prayer that I wanted to be home for Christmas" . It of course made us cry but , also we were so proud that our little girl had so much faith ! God truly has blessed us and I praise him everyday for giving me my little girl !!!
TodayWhat a wonderful Christmas hoilday we had this year . It was a true blessing to be home with Destiny well and so , very happy . On Christmas Eve Destiny had Christmas with her family , her grandparnets and Aunt and Uncle . Destiny got many gifts and she enjoyed playing with her cousion . Thanks , for all the loving gifts everyone I know she will surely enjoy playing with them all next week . The cutest part of Christmas Eve was seeing Destiny and Haley dance together in their own special way . Christmas Day we spent at home which was very magical , we all seemed to watch every move Destiny made . It was like we were trying to record every moment in our hearts . Santa , really treated "Destiny" good also . Her favorites were her doll stroller , bow-n-arrow, and her pink barbie gutiar. She also loves her cross necklace and all her new clothes . We had alot of great laughs , good food , and good company . But , most of all this Christmas we had Destiny in our arms !! We still have several more late , Christmas get togethers planned for Jan. which Destiny is looking forward to . We are looking forward to a very ahppy and Hopeful New Year with , lots of fireworks "says , Destiny" . LOL !! Merry Christmas to Everyone .
TodayI wanted to make a post before Christmas , I will be updating again on Sunday . With all of Destiny's Christmas news . We are happy it is almost Christmas Eve and Christmas Day . We are so , blessed we have spent this years hoildays here at home and not in PICU . I am so thankful Destiny is well and going to be able to really enjoy it all this year. This will be Destiny's 6th Christmas hoilday and that is a miracle in it's self when she was DX all the Doctors told us she would not make it to see her 2nd bday , boy has she proved them wrong . The power of prayer is sure wonderful . Each day we will contiune to pray for our miracle {a cure for SMA} and we will never give up Hope for our little girl . I can not wait to see her smile and have pure joy this hoilday ! Along with the love for our little girl , prayer and Destiny's will to make it to a new day ; I want to also thank "all" of you for the support & hope you all have for our little girl . And always being there for Erwin & I when we need a shoulder to cry on. We could'nt have made it this far without all of our family and friends . Merry Christmas & Many Blessing for the New Year !!
TodayI took Destiny to My MasterPiece today , she made me a beautiful plate with an angel on it . Afterwards , we went to the mall to have lunch and do some shopping . Then we went to Targert . Destiny , had to buy a key chain that read BORN TO SHOP to hand amoung her others on her chair . It read right , that girl loves to shop and spend all of her Daddy's money . LOL. She had PT/OT , which went very well , today they worked mostly on Destiny hands . Both of her rings fingers have severe contrations in them , one is now completly folded . We are exicted that the hoildays are almost here , we are hoping it does snow some on Christmas Eve like the news predicts . We will keep our fingers crossed !!
TodayDestiny , is feeling great !! She is still on her medicine for another 5 days to make sure she is complety over the cough . Many , tears of joy have been shed today over our little sweety . She was in her 5th Pagent today . This was also her first Christmas one . She was so beautiful !! She looked like an angel . And of course as always she won . A nice Santa trophy and a stocking full of goodies ! We want to thank everyone for their prayers for our angel baby . Please , check back with us all week for updates . We have alot of fun things planned to do .
TodayWe are still fighting this nasty cough . Last night Destiny had some trouble with her swallowing /choking due to all the mucas . She was such a big girl letting us use the suction machine , lots of treatments , and once we got the Bi-Pap on she sleep very well all night . We talked with her lung specialist and he is putting in an order for her a cough assit machine . Hopefully, it will not be long and we will get it , it is much needed . Today , she is feeling better already with little coughing . She is back to her norm . happy , full of energy self ! LOL. We hope this is a sign she is almost over it . We are blessed that Destiny is such a fighter and a troop having to do all this it keep her well . "Dest." , don't give up will will kick this cough . Just keep up the good work and keep smiling !!
TodayFed- X just left the house . We got in all the paper work from Stanford . Destiny , is staying over at Mom's tonight so , Erwin and I can look over all of it together . I want to thank Elizabeth's family again for all the advice . And also , to Krista for always being such a great encouragement . And thanks Mom for being my rock and helping us . We love ya'll all !! We will discuss all the trials and go over the paperwork with Destiny's doctor's on our Jan. apt.'s
TodayWe went to see Santa at the Mall today for a little Homeschool trip . Destiny , really seemed to enjoy it ! She has rails today , so we have increased her BT's and started chest PT and the vest . We are trying to stay on top of things as much as possible . We plan to stay in the next couple of days and keep her out of this cold weather to get her over this and to keep her from getting worse . Destiny , had PT/OT today , both her teacher and I are aso , happy !! Destiny , had a 100% flatten of her right foot today , and a 65% in her left we may able to get fitted for braces again soon. And Destiny will be able to have foot rest to use in her new chair , this is a big milestone for us !! We are so , very proud of Destiny !! We will go again Tuesday for PT/OT.
TodayI wanted to let Maria , Brady and Joseph we are praying for them . Remember to never give up HOPE ! As a team we will overcome all the battles SMA brings to our babies . We are here for you any time day or night !! God Bless !
TodayDestiny , is feeling well today . We have gotten an antibotic today for her cough . Hopefully , to prevent her from getting sick . We are babysitting Haley today . Destiny , is such a good little Mommy to her . They are having fun doing Christmas crafts together. We had our phone interview with Dr. Wang's office today . We will be getting all our paperwork to look over tomm. by Fed X . After , getting her doctors ok we will be arranging a date to fly to Stanford for our 1st apt. "Thanks , to Elizabeth & Family for all their help and advice"! We love ya'll ! Destiny , also got to go last night to love on baby Wyatt . And tonight is Destiny's little party with her girlfriends. They are going to do some baking & exchange gifts . She is so , exicted !!
TodayDestiny , coughed most of the night and this morning she is rattling with a deeper cough . I will be taking her into the doctor tomm. to get her started on med.s I pray that we maybe if we catch it early she will not get sick . I am keeping my fingers crossed ! Other than the cough and chest rattles, she is ok and patiently watiting for her Daddy to get home today .
TodayErwin , left off for camping yesterday . So , Destiny and I went shopping for Christmas . We took Haley along with us . Having to little girls to spoil was so , much fun !! We sleep - over with Haley and Kim last night . Destiny , really enjoyed it alot . Her and Haley had alot of fun together . We got a call this morning , that our friend Stefanie and Theron's baby was on his way . So , we went to the hostipal . "Wyatt Lane" , 7.3 1/2 lbs. and 19 1/2 inches was born with a head full of black hair and the most precious little boy you have ever saw . Destiny and I have to get presents wrapped tonight , before Erwin get shome tomm. so , we are having a girls night with popcorn and movies . THen we will have cocca and play Christmas home video's while we wrap up some gifts . Hope everyone is having a great weekend and taking in all the wonderful sights and moments of the hoilday season !!
TodayWhew ! We have had a very long day . We headed out early to get some more Christmas shopping done , then Destiny started her PT/OT today , she did well although her therepist said she is degressing in her hand strength and we will be working on that . She is haiving some finger folding also . Her left foot is severley contracted and we are now looking in to something for it . Destiny , was really tired after it all today "she is such a hard worker" and I am very proud of her . We will go for her next PT/OT on Tuesday . Tonight , we had a wonderful family night . We all went to see Santa . Destiny , looked so grown up on his lap ! I am so blessed to have yet another Christmas with her . Our little Haley {Destiny's couison} was scared of HO, HO ! We of course took lots of photos and video . We go to a Christmas event every other year the " Pilgrimage to Bethlehem" it is a traditon with Destiny . She loves it so much . I wish everyone could have heard her singing and watched her eyes light up . We had a great time watching the girls be together and share another memory . And of course afterwards we went to Chinese Destiny's pick for dinner ! LOL.
TodayWe just got wonderful news !!! Destiny's new chair has been ordered as of today ! We will be getting it the first of Jan. It will be a faster model with lots of new things for Destiny's needs . It will have reclining and a new head support system . We are so anxiuos and happy !
TodayWe have made it home !!! We drove in last night to make Destiny's girl scouts meeting . We had a wonderful time in Monroe . We had a good visit , did some shopping , went and saw Chirstmas lights , and had lots of laughs . We came home loaded down !! Destiny , is still well and doing great ! We are glad to be home again ,we have lots of plans for this month . So , keep checking in for all our updates . "Happy Hoildays" ...
TodayWe had our girls scouts meeting last night , we have another next Tuesday night , we may have to come home early than we planned , being Destiny does not want to miss it . LOL . We will see , her mind my change once we are gone . We have alot of things going on with Girl Scouts this month for Christmas they get to go help out at the ZOO and see the sarifari of lights there . Then when the hoidays are over it will be "COOKIE TIME" !! I am cookie mom along with being asstiant leader so, get ready Destiny and I will be hitting you all up to buy some cookies !! LOL. Destiny , is doing great !! She is rotten as ever . We are going off on our trip tomm. so , we will be sure to update you all soon as we are back . We hope and pray that everyone week goes smoothly . Try and relax and cherish every minute you have with your childern {they grow up so , fast } . God Bless everyone & thanks for all the sweet post on Destiny's guest book .
TodayWell today , has been a very busy day . We are packing getting ready for our trip to Monroe . To go visit family and go shopping . We will be out of town from Thurday - till the following Wednesday . We are really looking forward to getting away . We also , got several apt.s finally made for some things that is going on with Destiny . She will be going to to Monroe for apt. on Jan. 6th and then to Shrev. on Jan. 20th . We are not looking forward to all that may occur with these apt.s but we are looking forward to getting some answers to some problems Destiny is having . But , through it all that we have gone through , and deal with on day to day , we will never give up HOPE !!
TodayAlong with the news about all the research on SMA we found out today that , Destiny will be starting PT & OT on the 9th of December . She really is looking forward to it .
TodayGREAT NEWS!!!!!!!!!!!!!!!!!!!!!!! Columbia University News Office of Public Affairs Susan Brown, Assistant Vice President and Director 212.854.5573 FOR IMMEDIATE RELEASE Contact: Alissa Kaplan Michaels, 212.854.9752, am2443@columbia.edu Image available upon request Columbia Researchers Identify Drug as Therapeutic Candidate For Spinal Muscular Atrophy Scientists Develop Data Analysis Tool, Screen More Than 47,000 Compounds New York, Nov. 29 - Using a newly developed technology, a team of Columbia University researchers has uncovered that indoprofen, a nonsteroidal anti-inflammatory drug, may increase the production of a protein lacking in patients with spinal muscular atrophy (SMA), a fatal pediatric genetic disease. It is the scientists' hope that the discovery will lead to additional developments and even a treatment for SMA, a neurodegenerative disease that is the leading genetic killer of children younger than 2 in the United States and Western Europe. SMA has an incidence of 1 in 6,000 live births. Currently, no treatment exists. "Indoprofen is now both a chemical tool that researchers can use to study this disease and also a therapeutic candidate for these children," said Brent R. Stockwell, Columbia assistant professor in biological sciences and chemistry. This latest research was conducted at Stockwell's lab, and is published in the November issue of the journal Chemistry & Biology in two separate articles: "Indoprofen Upregulates the Survival Motor Neuron Protein through a Cyclooxygenase-Independent Mechanism" and "A Flexible Data Analysis Tool for Chemical Genetic Screens." Mitchell R. Lunn, Columbia senior research staff assistant and lead researcher on the study on indoprofen, which is structurally similar to ibuprofen, said that the next steps would be experiments to understand its mechanism of action, to deliver the drug to the spinal cord, and toxicity testing of related drug molecules. A clinical trial for its effectiveness in treating SMA could follow. It should be noted that the researchers found that ibuprofen and other nonsteroidal anti-inflammatory drugs had no effect on increasing the production of the protein lacking in individuals with SMA. However, researchers uncovered the potential for indoprofen to increase the amount of Survival Motor Neuron (SMN) protein, the specific protein deficient in SMA patients. The results come from testing more than 47,000 compounds using a high-throughput chemical genetics approach. The data were studied with a robust analysis tool developed in the Stockwell Lab. This new software technology, known as Small Laboratory Information Management System (SLIMS), is freely available for academic use at http://slims.sourceforge.net "Our software package SLIMS enables researchers to analyze rapidly the mountains of data that result from chemical genetic screens," Stockwell said. For example, SLIMS is capable of organizing and "normalizing" raw data, meaning that it can "correct" for laboratory conditions such as humidity and temperature, which vary daily during the course of a high-throughput screening experiment. Additionally, SLIMS automatically identifies and corrects the systematic errors that are common with the robotic technologies used in screening. Scientists from The Ohio State University; the Centre for Inherited Neuromuscular Disease RJAH Orthopaedic Hospital (UK); University of Massachusetts Medical School; and the Neurogenetics Branch of the National Institute of Neurological Diseases and Stroke also took part in the indoprofen study. * * * For copies of the journal articles, please contact Cell Press at 617.397.2879. * * * Columbia University in the City of New York, founded in 1754 as King's College by royal charter of King George II of England, is the oldest institution of higher learning in the state of New York and the fifth oldest in the United States.
TodayWell , my baby girl has lost her other bottom tooth tonight . It has been the wonderful these last several days . I will cherish these simple moments as much as all the grand ones in life . These are things I have thought I might never get the chance of seeing . Having all these special times with Destiny , means more than anything in the world to me . I am so , blessed that God continues to shine his light on our angel !!
TodayWe went and had Destiny's Christmas pictures done tonight , she was so beautiful !! I can not wait till they come in .
TodayWhat wonderful news we have ... Destiny is now well and feeling great ! She is has a cough every once in awhile but , we certainly can deal with that . We are so , blessed we kick this without having a hostipal stay . Our Thanksgiving Day was so , nice we enjoyed family , lots of good food , and other great memory with Destiny . We truly are so , blessed !! Yesterday , Destiny also finally one of her bottom teeth !! Her Nay-Nay pull it . We took lots of pictures and video tape it . Destiny , got 5 dollarsa from her Nay-Nay & Uncle Danny , 5 dollars from her Maw-Maw & Pa-Paw . Destiny , wrote and drew a picture for the tooth fairy and placed it all under her pillow . This morning when she awoke there was 5 dollars & Teenage Drama Queen {DVD} left under her pillow along with a letter from the tooth fairy with silver fairy dust on her pillow . Destiny , was so happy and wants to show her smile off even more now . LOL. I know losing a tooth is a step in everyines lives , but this is a milestone we did not know if we would get the chance of having with her , it was a very emotional and wonderful moment !! Well , the next 2 days Destiny and I will get to go shopping !! Hopefully , the crowds will not be to bad . She plans to buy the Mickey Christmas movie with her money .
TodayWe jsut got in from Destiny's Doctor apt. She still had a cough , runny nose {now} , and chest conjestion . We are doing medicine , BT's , and chest Pt with her vest after each BT . We are fighting to keep all teh yucky stuff out of her kungs . At least her O2 is stable now. That is always a good sign . We will go back on Tuesday for a re-check , her Doctor also is in the process of making some apt.s about her {throwing up , choking and reflux problems} . We are ready for a wonderful Thanksgiving and praying Destiny soon gets well . We thank all of you for loving our little angel !! God Bless and have a great hoilday !
TodayOur live is always full of ups and downs . And last night was one of the downs , after us thinking Destiny was getting well she had a bad night . She started the bad yucky coughs again and started throwing up last night . After finally getting in the bed adn getting her settled her O2 fell and we got her Bi-Pap on and bleed O2 in , it soon came up . After , about 20 minutes she started choking in her sleep and grasping for air , we increased the Bi-Pap setting and soon she slept peacefully . So , to make a long story short we all had a rough night . She is up this morning with a dry cough , we have the humifier going , and we plan to stay indoors and pump the Bt's to her today . We have an apt. for tomm. with the Doctor. But , as always Destiny is in the best mood zooming around the house with that big smile on her face . We really are so , blessed and there is always a rainbow at the end !
TodayWe have good news !! Destiny , is feeling alot better . She is still having a cough and we are still doing all our med.s and BT's to help her out . Her O2 levels finally came back up this morning and has had not fever . We are so , happy !! She is still very weak and tired so , we are still taking it easy till she is fully well . We are looking forward to a great Thanksgiving hoilday , we have so much to be thankful for this year !!
TodayDestiny , had rough night . She starting choking and throwing up , and having trouble breathing . We bleed O2 in along with her Bi-Pap . Is is up this moring with a very dry cough . Through , it all she maintains with a smile on her face . We really hope she gets better over the weekend . It is raining and cold so , we are keeping her in as much as possible .
TodayOur precious Destiny , is feeling worse tonight . She is again running fever and keeps saying "Mommy I am just so tired". She is not eating very well , either today . I just wanted to update everyone , I am going now to cuddle up with her all she wants is to be held and lay down . I pray that we see a change for the better in the morning .
TodayThis morning Destiny is having swallow breathing , alot worse cough and it is harder for her to take good deep breaths . We are using Bi-Pap during waking hours today to help to open her lungs up , lots of Bt's , and O2 on 2 liters. She is being a very big girl and taking her antibotic . Her spirits are still good , but she wants to be loved on more today and cuddled . Which I am joining . We pray that Destiny will keep ovr this soon , so she can enjoy the hoildays next week . We have but , all our burbens in God's hands and trust him to give us stength . It is so , hard to watch your baby be so , sick and not be able to help her . All we can do now is love our little angel and pray !! We want to thank you all for all the uplifting & encouraging post on Destiny's sites and al the nice emails to both her and I . A big thanks to all the family & friends that have called to check on her and came by to lift her spirits and help us out . It means so , much to have all the support throughout our jorney with this uncureable disease of SMA .
TodayOur friend lost his battle with SMA this morning , around one AM. Little Cole was 27 months old and so , adorable and brave . Our hearts are deeply saddended for Cole's family and friends . We know little Cole is running and laughing in the streets of Heaven with God's angel and all of our SMA angels .
TodayDestiny , had her Doctors apt. today . We found out that she has a severe heart condition and we are being sent to a Cardiologist where she will undergo more tests and be on heart medicines , for her weaking heart .We wil know this week our apt. date and where we will have to go . Destiny , also weighs 48 1/2 weighs now !! Growing like a weed !! She is also running a fever of 103 ' , she is on antibotic and increased BT's now , being her cough is back , fever and she is very tired today { signs of her being sick} . Destiny's chair is still having problems , it would not even turn on this morning , but thankfully Dadddy was able to fix it , her wheelchair provider has put a rush on her new wheelchair "wish us luck " . Destiny's Doctor is having Destiny start PT/OT again due to her progressing weakness. We will have our evalation next week. We have had lots of tears and prayers said today , even thoguh we knew this time would come it still hit us like a ton of bricks ! Erwin & I both were able to be at the apt. together and hold our little angels hand . We will never give up Hope !! We hope you will keep Destiny in your prayers . We just want you all to know what her little life means to us & to along with us watch her spread her wings . We will keep finding our strength by holding out , knowing that hopefully one day we will have our cure for "SMA".
TodayToday , Destiny is having a very weak day . This last month we had to change to using only sippy's with 2 handles . Today , she can not even lift that . I pray that today she is just having a weak day , and she is not progressing . I know that God will never give one more than he can handle but , it is so , hard seeing her slowly lose the little strength she has left . It is also very hard to see not wanting to drink because she is embrassed to have help . She is just to brave for words . She also , has been coughing on and off all day , we hope she is not trying to get sick . We will do BT's more frequently tonight and start her on more med.'s just in case . Even though she has had a pretty rough day , she has been happy with a big smile on her face , she got to spend the day with her little cousion Haley , go to her friends bday party and play with her other 3 cousions today . We are blessed to have another wonderful day even in the mist of it all .
TodayTonight , we took Destiny to see Sharks Tale the movie . It was so nice to have a family night together and getting to see her eyes sparkle as she laughed was worth everything! This week was really stressful with the Echo test but , tonight made up for all the worry and heartache . I cherish each minute with her . She is aleady planning on the next movie she wants to go see . LOL. She keeps on our toes !!
TodayWell , Destiny went through another Echo today . She was so , big and need well the whole time they were performing the test . They gave us pictures of her heart for her scrapbook and a picture showing her leaking vaule , things hit home today . But , at least that is behind us now , we go in to the Doctor on November 17th to go over the results . I we have to do now is have patience & faith that it all goes the way God has planned .
TodayLast night we had prayer service with our pastor and we had a special prayer for Destiny in service at church today for her up coming Echo test on this Thursday the 11th . We hope you will all also keep her in your prayers this week . We had a great service & fun at our church fevistal today , it was fun to watch Destiny enjoy herself so much. I want to thank evryone who keeps checking in on our little angel "Destiny Hope" . She loves to reading all of your messages each brings a smile to her face. May God Bless you all .
TodayDestiny , had a good night of rest with no fever . She woke this morning very happy & perky ! We will watch her close to make sure she is not getting sick , we have increased her Breathing Treatments due to the cold winter here now , so hopefully that will also help to keep her well . So , hopefully yesterday she was just overly fatigue will us being so , busy lately . I want to thank everyone who post messages to her , she checks them , everyday and each time she sees a new post she gets so , happy !!
TodayDestiny , just woke up from her nap . She is running a fever . We just wanted to ask everyone to say a little prayer for her . Thanks !!
TodayDestiny , was zooming around in her chair and came around , out of her walk in closet to fast and hit the door with her foot . She is having alot of pain with it now . We are going to watch it very closely to make sure it does not get worse . She has also been saying she is tired and cold today { but no fever }? I hope she is not getting sick . So , I put her down for a nap with her Bi-Pap on hoping she can get some rest . She has been mommy's big helper today , helping me clean her room and going through toys and organizing things getting ready for the hoildays to come . { She is getting so , big !} I hope she feels better after her nap .
TodayWe had a wonderful 2004' Halloween Holiday with Destiny . It was another great memory added to our hearts . She was so , very beeutiful in her costume , and so very big saying trick -or- treat and thank you to everyone this year . She is growing up so , fast and we cherish each moment with her !!
TodayWell we heard from the doctor yesterday evening with Destiny 's Echo test results. It did not come back good so, we have to have a another one performed on November 11th .
TodayDestiny , has been doing well all week . We are so , glad that she is feeling good and we will hopefully have a great Halloween weekend . Destiny , is dressing up as Cinderalla !
TodayWe got a call early this morning from Destiny's local doctor , about her Echo yesterday . He was able to see the test before wasit got sent off to New Orleans {Tulane} for futher readings . It shows Destiny , has a leaking value in her heart . We will know in more detail about things as soon , as we get results back from Tulane .
TodayWell , Destiny had her Echo performed this morning . During the tests Destiny had a very severe cause of her Essential Tremors and we had to restart the test . They found that Destiny heart is beating alot faster than it should and the may be signs of some other things going on with her heart . So , they have sent the tests to New Orleans , Tulane Hostipal to be read and they put a rush on getting back the results. We should know in a week . We want to thank everyone that has Destiny in their prayers . This will seem like a very long week till we get the results in . But , Destiny's beautiful smile and our faith in God will get us through .
TodayWell, the weekend is around the corner. Which is good , being I have alot of fun things planned to do with Destiny. But , sitting here today knowing that Monday will be here within a blink of the eye. I am so worried about the Echo! I pray God will give me strength I need to get through this . Rather good or bad results I know we can make it with his guidance and love . Destiny , has a very restful night (the first in awhile ) so , she is full of energy today . Already, zooming around the house singing at the top of her lungs "you are my sunshine". She always makes me stop and see what a blessing everyday is . I am so , thankful God gave me such a special angel !!! Please , keep Destiny in your prayers and be thinking of her on Monday !
TodayDestiny , had her flu and phemonia shots today she was a very big girl ! We have to be at the hostipal at 8:00 clock Monday morning for a echo to be performed . Destiny's , Doctor has some concerns with her heart . We hope you will keep Destiny in your thoughts and prayers . And be thinking of her during this time .
TodayDestiny , had a pretty good weekend although we had a night of her crying spells where I had to rock her most of the night . We also , had the throwing up spells yesterday even though we are on reflux med.s things seem to be still occuring . We go in on Wednesday for her flu & phemonia shots and at that apt. We hope to have a glucose test ran and dicuss the nissen and gmic - key button . Please , say a little prayer for Destiny and wish us good luck !
TodayDestiny , has been doing well these last couple of days . We are very thankful ! She has been doing all her medicine and bi-pap great . We have some more meeting with OT this coming week and on Wednesday she will get her Flu shot .
TodayWe have applied for Destiny a canine asstiant . She will be put on there waiting list and when her name comes up we will participate in aweek training camp . Where Destiny will be matched with the dog that best suits her needs & personality.
TodayDestiny , is having some problems with her hands . We have an OT evalutaion today .
TodayDestiny , had a good weekend . Although , we are still fighting with a bad cough , with swallow breathing . She is doing very well with her peak flow meter , her highest number is 130 we are working on getting it to 200 . With lots of lung therapy , we hope to reach this goal . Wish us good luck !!
TodayDestiny , has a bad cough today . So , we have increased her BT's to every 4 hours . She has been really tired toady , so we relaxed most of the day . Other than that she is in a very good mood , and has been trying to wiggle her teeth out!
TodayWe have big new... Destiny , has "2" of her bottom teeth loose . We went in to the Dentist today to have him check and make sure all was ok. He said all looks great & the tooth fairy will be coming to our house very soon! We also went to the lung specailist today. We received a Peak Flow Meter device that Destiny will have to use several times daily to help montior her lung strength . We will go back to the lung specailist in Baton Rouge office for some tests in Febuary. Destiny's , lung doctor also is sending us to Texas soon , to talk with a specialist on the Titanium Rib Project for Destiny scolosis .
TodayWe went in to the Dr. this morning . Destiny , is has high fever and throwing up non- stop . She had blood work done which showed she had a very bad virus . She is on a medicine for 48 hours which will hopefully make her better. She also had a shot for all the throwing up , which made her sleepy . Maybe she will catch up on the rest she did not get last night . She is also having some resp. problems which we will discuss with the lung Dr. on Thursday's apt. Please , keep our little angel in your prayers!
TodayDestiny , is running a fever of 102 degrees today . She is not feeling very well . Please , kept her in your thoughts and prayers !
TodayDestiny's sleep-over was a great sucess! All 6 of the little girls showed up . They did not get to bed till 1:00 this morning . Destiny has a blast and we took lots of pictures and video everything so , we can always remember her very first sleep-over !
TodayDestiny is starting to have signs of getting sick again , she is on Bt every 3 hours again and a medicine . We hope she will get better soon ! Please , keep Destiny in your prayers . She is having her sleep - over tonight and hoping to ffeel up to going to the camp on Saturday night .
TodayDestiny , is getting ready to have her very first sleep - over this Friday night . She is very exicted and we have lots of fun things planned .
TodayToday , Destiny started Sunday school and we to Children's church . She was such a big girl and loved it very much . She is a proud new member now , of a new a church .
TodayToday , Destiny received her new portable O2 , it is a backpack that she can carry on her wheelchair and use while traveling and zooming around everywhere! This will help to make her daily life as comfortable as it can be .
TodayDestiny , had a really bad night last night with very strong tremors . We stayed up most the night rocking . It seems to be the only thing that calms her . We are afraid her O2 levels are making them worse . We go to see the lung specialist on Oct. 7th .
TodayDestiny , has started girl scouts ! She is very excited !! I am the assistant leader so we are looking forward to getting to have a lot of mommy and daughter fun !
TodayDestiny , was in PICU from the 8th -15th of September with Pneumonia , resp. distress and failure , low O2 and high fever. She is now , home on 2 liters of O2 , Bi-pap , ez-pap , Imp machine , Bt's every 4 hours and meds . We also just found out Destiny has a severe reflux problem and now is on Meds daily for that too . Destiny , has a very long road ahead but , with her brave courage and her many angels she will make it ! Little Destiny Hope has so , much "faith and hope"...
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