My Updates!

You're Listening to The Climb by Miley Cyrus

February 27, 2011

Lizzy called her Uncle Calib for the third time this week this morning. " Please Uncle Calib let me meet the band Perry Please Please I love them so much!" Then she says " I love you Uncle Calib!"  I know she got to my heart I am sure she got to his too. He does security for celebrities in our area. He was security for The Band Perry. He made no promises but we got a call this afternoon from him and He says "Be here as fast as you can I got you a private meeting with The Band Perry!"  Oh my!! I wanted to cry! he hooked her up!!
Lizzy broke out in her red blotches all over. She gets like that when she gets excited or upset. I hurried and got her coat on. I did not have time to change. Getting Lizzy out the door was my main concern. It was her day, it was her dream and her time  to shine. I stayed home while her Mom took her quickly to the Crystal Palace.  Thank you Kimberly, Neil and Reid Perry for taking time out of your busy schedule to meet our little shining stars Lizzy and Kayleigh. Thank you Calib and The Crystal Palace for giving Lizzy this special gift. Lizzy got to have a special private meeting with The Band Perry( Kimberly, Neil and Reid Perry) and is at the moment still star struck. They are the sweetest people Christen said. Kimberly Perry went and got Lizzy and Kayleigh( Lizzy's friend ) The Band Perry t-shirts . Neil Perry kissed Lizzy on the cheek. Lizzy is still awed. She got to watch the sound check too. Kayleigh got to stay for the concert tonight but because of recent out breaks of Influenza and RSV Lizzy had to come home. She doesn't like being in huge crowds when there is illness like that around. I guess we programed her that way with out even knowing. Lizzy told me" The Band Perry is beautiful!" How is that for a special day in her life? I am sure that today will be a memory she will NEVER forget.
She called me on her Mom's phone after she left and she was actually so" star struck" that she had such excitement in her voice I could feel her aura just glowing even though I could not see her at that moment. I was right when she came in the door her she was glowing.
Paul had a great interview Friday ( the crowd roars!!) He also did testing. Hoping and praying he gets a job soon. This one would be so great!! Its been two years here this coming week that his place of employment closed its doors and was sold to a foreign company. He was not hired back because they busted the union and would not hire back union officers. Paul was UAW  health safety, skill trade rep besides working full time in maintenance. Its been a had last few years but we are getting through it .
Lizzy is doing great!! She has handled being serial casted with the same casts on over a week now. Her teacher has had a cough so we have not seen her this week but that is okay we want you to stay away with even a tickle in your throat.She is coming back on Monday.
Its been quiet here all week with Lizzy'z dad not being around,. Lizzy has be extremely good this week not as much whining from being bored. Paul and her have been spending lots of time together.
Some sad news came our way. My niece's boyfriend was killed instantly in a car-motorcycle accident in Florida this  past week. Keeping Ariel  in our prayers.
We need to add Leah Miller your prayer list. She is pretty sick . Corbyn has been sick too. Christen's friend's Melanie son Lincoln is in the hospital with RSV and pneumonia. Please add them to your prayers.
On a good note thank you to my dear close friend, You are always there for me. Thank you for being in my life. I love you with all my heart.
Thank you to all my friends that are there for us.We are so lucky to have each one of you in our lives.
"We believe in miracles because we live with one!"

September 7, 2010

Life is good. Every just think to yourself, " life is good?"Things are better? Then, take a big "sigh" and say "Oh yeah" this is what its all about.

Lizzy got her new Bipap/Vent. The Trilogy. She loves it!!! We switched to a wonderful respiratory care company out of Indiana . Mobile Medical Maintenance. They have RTs in Peoria. DR. Schroth hooked us up . No more dealing with denials from Apria !! Thank you DR.Schroth!!! Apria the company in general has been the biggest pain  in my hiney since we have started getting respiratory equipment for Elizabeth .Yeeeee Haw..... As, I said, Life is Good. They are also trying to get Lizzy a new suction machine and a few other things.
Elizabeth is actually wearing her hand splints , knee immobilizers every day now. She has been back in her stander also. Life is good.

We are searching for a new donor for breast milk for Elizabeth. Her current frequent donor is pregnant. So, happy for Dina and her family but going to miss her . She gave Lizzy her most precious gift  that only God can make.  Thank you Dina so much for helping Elizabeth.

Elizabeth is on her computer most of the time and has been for over a year. She finds so many games online she can play. She uses an online key board for the up /down buttons and uses it to type in where she wants to go. Its great to see her able to go any where she wants on the internet. (Yes, she is monitored). It makes her world so much better. Life is good

My handy husband finally replaced the down stairs light fixtures. Some that have been gathering dust since 2004. I bought some of them  myself when I was getting ready to redo my house. Things have not been the same around here since 2004 The carpet in the living-room was finally replaced . It has been in the dining room  rolled up  in a corner since before Christmas last year.
Life is good.

I got all my wood work washed ,my window seals clean and my curtains washed while every one was at the parade yesterday. Life is good.

We have been cooking up a storm around here. Christen has learned to make pie crust. She made a pecan pie and pumpkin pie last night and brownies tonight.  I am totally allergic. I break out in fat every where!!I have been good.  I am getting ready to make hair bows again for the holidays and for a few fundraisers. Its been hard with all we have to do all summer. We are so busy still but no big trips for awhile.

Lizzy fundraiser is October 23. We have a great committee and I think it will be a huge success!!

"We believe in miracles because we live with one!"
 

March 12, 2010

May 24 22009

Oh, my goodness I actually have a few minutes to update.
It has been a busy last few weeks. We have also had Corbyn and Lexy here this week. I hope I dont forget anything!!

We went to a MDA " Meet and Greet" a week ago Thursday there we met some new people and saw Cindy a favorite lady of ours since we met her last year at the telethon. It was interesting. I talked to Cindy's husband about some power chair issues that have not been resolved in Lizzy chair in almost 3 years. He put some fire under my hiney to get something done with the speeds on Lizzy's power chair just from listening to him. I went home and emailed a few people from Permobil since our vendor here was not able to get the problem taken care of. It worked!! I got a few emails from the company the next day and one from Richard from Chicago. He was going to fix Lizzy's chair the very next day when he got back but we told him we could wait till Thursday. He was out of the country till last Sunday. He is a great guy!! I wish there were more "Richards" out there. He is so full of info and guidance. We need him here!!

We went to MDA appt this past Tuesday in Peoria. They were very excited Lizzy is doing great. Angie the nurse(Lizzy's favorite) said Lizzy was her birthday present. Dave the OT said Lizzy's left arm contracture is so much better. I picked Dave's and the MDA PTs brains on ideas on how to help Lizzy more at home. I do things that I know but I think with her age now I need to know more. They showed me. Dave is going to make a hand splint for Lizzy's hands to sleep in so she gets more range.
We have no Local OT and PT right now. We will be seeing a local PT here soon as she has an opening . We have to pay out of pocket for PT here that since she does not take Lizzy's insurance. As, you know our old PT stop seeing Lizzy before she quit and the director never replaced the OT that quit last summer. So, our hospital there had no Peds OT or PT. Still no gel pads in from National Seating for the arms of Lizzy's chair. We do not another appt for 9 months instead of 6.

Thursday, life as Lizzy knew just got better better. We met with Richard from Permobil at Lizzy's speech appt at the hospital. He took five minutes to fix an issue that has been going on over 2 1/2 years. He speeded up her power chair so, we can actually take walks and she can run and keep up with her friends. Only problem isshe is so fast now I can not even get a picture of her because every time I try she takes off on me!! We can turn it down but to see her with so much independance it hard to do that to her. He also got a hold of National Seating to order a switch for Lizzy's chair so she can turn it off , up , down , faster or slower herself. Cool.

Friday we went to a MAW get together at The Peoria Zoo. Lizzy and Caitlyn loved it.
We had a "Stalker Peacock" that was running wild at the zoo. Every where we went it was right there. Caitlyn got really scared and almost climbed up Christen to get away from it. It was harmless but it was weird that every where we went it as right there. Lizzy was so fast she would stop for a second and take off!! I got very few pictures of her! She was the only kid there with a power chair!! All the kids thought Lizzy was "too cool"! Some of the adults thought she was "too cool" also. It was too funny. Its like they never saw a child her age in a power chair that can work it so well. She was recognized by a few from her MDA telethon segments. Lizzy is recognized in Peoria( a large city) but not in her own home town. I find that odd.
The girls had a great time. Caitlyn spent the night. Christen took her home early the next morning.
Saturday, evening I get a call from Dawn and Caitlyn Grace was running 104 fever while they were at a wedding Jeff was in!! She asks me if Caitlyn had had any issues and I said no not at all. She had a great time ate well . She played and ran like normal. Well, Dawn was on her way to the ER because Caitlyn was shaking from her fever. After, Xrays come to find out she has pneumonia!!! They gave her a antibiotic shot, an oral antibiotic and sent her home after her fever went down some. My gosh my poor Caity. I am just stunned at her being sick.. She was fine.... My gosh. At the wedding she told her Mom she was sleepy , she could feel her lungs filling up with liquid and she could not breathe. A six year old..... Go figure... She is better today and fever an hour ago was 99.

Lizzy played outside today with Papa and her Dad for a bout an hour twice.. Blaze was amazed Lizzy could keep up with him in her chair. Lexy was here today and I played with her most of the day besides cared for Lizzy.

Well, the holiday weekend has one more day left.

Please remember tomorrow those who were dear to your heart that are only here in spirit and in your heart, The many men and women thought fought wars for your freedom and the babies and children that earned their wings at a young age.

Please say some prayers for Caitlyn, Drew and all the kids that are sick.

We believe in miracles because we live with one.

On May 11, 2004  we learned the cause of Lizzy’s weakness and our lives changed forever.
Spinal Muscular Atrophy, SMA. Elizabeth was diagnosed as type 1, or Werdnig- Hoffman Disease. Children diagnosed as type 1 are not expected to survive past their second birthday without extensive respiratory support and despite aggressive care it doesn’t guarantee survival, nor does survival come without complications and heartache.
Christen was told to take her daughter home and love her; she would most likely die before she turned of age one, two if lucky.
I dropped to my knees screamed as if someone pierced my heart with a hot knife. How could this be? How could a child so beautiful and full of promise be handed down a death sentence? How could we even consider just letting Elizabeth die? How could we not try to prevent the inevitable?
I knew then that I could not take this news lying down. I HAD to do something, anything. I wasn’t willing to let her go and I was not going to sit back and wait for her to die. Were these doctors crazy??
While everyone else grieved I went online and searched the Internet. I was on a mission and I knew that it was up to me to save our little girl. (Reprinted from Elizabeth's Story In Jennifer Trust magazine )

I found the Stanford trial that DR. Wang had started that Lizzy was accepted into. She was put on Hydroxeurea in the drug study. The drug helped stopped the progression of Lizzy's disease. Dr. Wang was so great to us during the trial. He gave us Hope.
I found many families that aided in support and proved to me that these kids can live with the right care
I think the hardest part for me to learn was to listen to parents/caregivers of these kids more than the doctors that were unfamiliar with SMA. You have been taught since a young age that your doctors know everything and you need to listen to what they say.
We had gotten machines for Elizabeth to help her stay well on borrow from Laura Stants (SMA Support) and FSMA until Elizabeth was able to get hers.
We went to Stanford and then a few weeks later after we got back we were on our way to see DR.Mary Schroth. The best Pediatric Pulmonologist (in my opinion) in the world for kids with SMA. She taught us how to use Elizabeth's borrowed machines. DR.Schroth and her staff at U.W in Madison, WI is the best ever for kids with SMA,
No respiratory therapist that worked for our DMEs here in this area in IL would take on Elizabeth case until she was 17 months old.
DR. Hough (Our family doctor) does everything he can do to get Lizzy what she needs to help her and believed in me after we started being so aggressive with Elizabeth's care He actually tells me, If it was not for me Lizzy would not be here." He is very proud of her. He does everything he can do for her and fights her insurance for the things he thinks she needs. He fought long and hard for the RSV shot but the battle was not won this past winter. He was very upset about that.

Lizzy is going to be six in September and doing great.
Her Papa actually can take her out-side now in her power chair and give her suction if she needs it. She can tell you what she needs. She plays with other kids and will now venture off across a room to interact with other children and come back for suction.
We still do not let our guard down with her but she has gotten much stronger and can tell you what she needs and when she needs it.
Her Amino Acid diet that is enhanced with donor Breast milk, her meds which is Hydroxeurea and oral Albuterol. She is one a daily respiratory regiment which includes nebulizer treatments,cough machine the use of a IPV machine 2 times a day and coughs and suction as needed . She sleeps at night on bipap and if she is very sick is also on bipap. I stretch her legs and arms daily. I use massage oil and rub her down while stretching her. I do mouth exercises and do what ever it takes to keep her strong.
We need to get her a pool some20how because she needs swim therapy so badly and was doing great with it. Then her PT said she would no longer see her. She has no OT and PT anymore because their are not any in the area that are willing to take her on as a patient. Hopefully, we have one that we are working on getting we have to pay out of pocket to for.
She is my heart and my life. To see what struggles she has faced and done well makes me so proud of her. She is am amazing child.
Its been a journey that has taught us so much, met several wonderful people and us made my faith stronger. She has changed my life.
Nothing is impossible if you believe in miracles.

I ask you now for prayers for another family that their brave little guy earned his wings today. His name was Logan Harman. Fly high Little Guy, fly free of disease.
I hate SMA.

January 6, 2009

Lizzy is doing better. She is back in her "Purple power chair" running all over the house tormenting her mother. She just got over an ear infection.
Well, The company Interlake here in Pontiac that my husband works for filed bankruptcy today. For some reason the union and workers have been told it will not be until Wednesday they would file. Tonight, I found a web-site that says they filed Chapter 11 in Delaware today.
Please please please add the workers of Interlake, their families and us all in your prayers. I ask again. The power of prayer works.
So, many unanswered questions . Its hurts to think we might have to leave my kids and my parents. My daughter Dawn is expecting a baby and due in March I want to be here to help her. I don't know if we will be able to stay here. Will we be have to or able to sell our house if we have to move? Will my husband be able to find a job at 54 if he has too? Will he be able to stay at his work. Will I be able to find work if I have to? The worrying is consuming my waking thoughts. From what I understand the company from Spain called Mecalux is supposedly buying the Interlake in Bankruptcy court. How that affects the workers in still unknown. The gag order is now off the workers and we know now that Interlake tried to get the workers to take pay cuts, pay more insurance costs, cut dental, take away vacation and all sorts of things, Four inch thick worth of demands so Metcalux would buy them. They threaten Bankruptcy and closing the doors if the workers and union would not agree to the terms. That was last week.
What ever it takes we will do it to keep us together. Elizabeth needs us to be strong for her.

Okay, President Elect Obama you have your work cut out for you in 2009. Lets see how you will get things done. You have a great staff with some of the best minds. There has to be solutions to this economy mess.

We all have a lot of challenges we are facing this New Year already.

The Prison situation is on hold for now.

We believe in Miracles. They do happen. I live with one and her name is Elizabeth.

Speaking of Miracles I wanted to ask you send special prayers for Sartoris family in Pontiac,IL . Vince and Mary Ann's son Sam age 15 became an angel on Jan 1. 2009. Sammy had Down Syndrome and had some heart surgeries my daughter Dawn had told me. Dawn loved him so very much.

Sam was a special little guy that had a great life on this earth. He was treated with so much love and I hear he gave so much love also. All that met him just loved him. Dawn and Caitlyn had went many outings and vacations with him , his sister and Mom. He was a very special little guy . I heard he always had a smile on his face. Dawn was devastated when she heard the news of his passing. I told her to celebrate his life and just remember the times with him as good memories. Mary Ann his mom is one of those Moms that you learn from.  She was one of the best moms I have ever seen. Sam got to do a lot in his short time here and Mary Ann had seen to that.
 

December 6, 2008

November 16, 2008

November 11, 2008

Elizabeth is feeling a lot better. Her nose is still full of stuff but she assures me she is ALMOST well. I think this illness is going take awhile to fully get over. She was still on Q-3 till 6am. I was getting ready to start a treatment at around 6 am she said "Nina I just want a cough and suction. I don't need nothing else" So we have went to more coughs and less nebs today since she flowing. Her treatments are going pretty well. The gunk went from thick white gunk to clear to thinner white gunk. She is still drooling like crazy

Lizzy denied her RSV shot today . My stomach sank to my feet when I heard that. Imagine that? They said (The Dr for Medicaid here in IL) "Since she is 5 years old her immune system should be strong enough to fight off RSV now". According to our doctor's nurse here since she said she talked to him on the phone for a long time today. So, much for all research they (medicaid) did on SMA Type 1s. I have contacted Dr. Schroth but have not heard anything yet. So, we are in panic MODE. They KEY is keeping her healthy and OUT OF THE HOSPITAL!!!!!  I don't know what else to do. Cancel all her appointments and stay home all Fall/winter? Cancel Holidays? No one comes in or out? We are careful but you never know who is coming down with what. Last year she didn't start the shots until December. If she gets RSV we are talking about several days hospitalization. If she gets RSV with having the shot it is not severe and with out the shot she could die. They just do not get it. She is only  about 24 pounds so its not like she will a huge amount.

On a good note the Xopenex was finally approved. I do think Senator's Rutherford's office had something to do with getting it approved. Thank you Peg if you did. You are so great.

Lizzy was in her power chair tonight and ran over her Mom so she got put in the corner with her chair off for 5 minutes tonight. You should of heard her. "I can not take this any more, This is terrible, You are so mean to me Mom, Oh my gosh Nina what time is it? " She did this for 5 whole minutes non stop. I had to hide my face I was laughing so hard.
God Love her she is such a little character with so much spunk and always something to say!!

Pray Lizzy can get the RSV shot or we find a way to pay out of pocket for it. I am just sick thinking she might get RSV. So many kids with Type 1 were so sick last year with RSV and hospitalized for a month or longer.

October 11, 2008

This Stanford trip was the best ever as far as flight and arrangements on our stay. We went site seeing with Molly, Andy (Andrea Doebbert's aunt and uncle) , Jennifer , Jacob and Todd Goodson. We went to Pier 39 where the seal lions have made a home after the earth quake. Took pics of Alcatraz, (could see from the pier) The Blue Angels were practicing and we got to see them. (Lizzy hated the loud noise) I almost peed myself a few times watching them coming so close to hitting each other. Lizzy and I took off though when she said the noise was hurting her ears. We went to park that the Canadian geese that migrated their after the park was complete and have not returned home.
We saw San Francisco down town and their very cool houses , the Golden Gate bridge park and the Pacific ocean.
It was truly a great trip. Lizzy was something....... LOL . The night we got there it was late. I did her treatment as usual and she was doing so great. Well I got woke up from her alarming at 140 heart rate. So, I asked her" if she was sick" and she said "Lady.... I am NOT SICK!! I just want to know what is in the package up there " I said huh? and looked up where she was looking and Molly had a birthday present for her that she had not given her in a pretty package on top of a antique bureau . LOL. I laughed so hard. She finally told me she was pooping. That was the cause of her high heart rate was high.
The visit with DR. Wang went excellent and he is totally shocked as everyone how well Lizzy is doing. He said he leg movement thing she does is like something out of a ballet. Lizzy has gained more weight again and looks totally great. He spent most of his time with Lizzy and he didn't not talk much to us. He shook our hands and said she is doing just excellent and was so awed at Lizzy's movement, talking and just Lizzy in general.
I guess the media people tried to call us and told Virginia (coordinator for Wang) and told her Channel 11 news was supposed to be there. Because something had come up they canceled. We had no clue they were even thinking about doing that. Thank God we didn't have too!!! They can wait till I lose some more weight . ( I hate surprises like that) Robert Dicks the media person from Stanford came in and saw Lizzy and took pics of Lizzy and her favorite nurse for the year end report for Stanford. Robert told us Lizzy was just one the most beautiful children he had ever met. That made us feel good and Lizzy looked at him and you could see the sparkle in his eyes. DR. Wang sent two residents in to LEARN about SMA so they got a quick detailed report from us on Type 1s and they need to understand SMA. NIV,AA diet (and breast milk) and how to help these kids stay strong by stretching etc. They loved Lizzy also.
The trip home was great except for the late flight last night
Molly and Andy made the trip so special. We stayed with them this time. Very Intelligent warm compassionate , heart warming people. They are like family to us. Their home is just beautiful.
We have to go back in March not sure when. That was something that we didn't not compromise on. No way we are flying during RSV season. We are always now taking the later cheaper flight and staying that extra day. Worked out great.
American Airlines were very accommodating on the the trip there and some of them were on the trip home. We do pretty well traveling with all 6 of Lizzy's machines and all of them not getting broken.

 

Thank you for ALL the birthday wishes and gifts for Lizzy!!!  I have not had a chance to write Thank yous yet but it will be soon!! 

September 30, 2008

Its been a great time this summer/fall. So many places and so much fun with Lizzy. Lizzy has had a great summer.

We have met new friends and enjoyed being with our good old friends.

So much has happened and so many wonderful things.

 

THANK YOU ALL FOR THE BIRTHDAY WISHES FOR LIZZY!!!!!! SHE HAD A GREAT DAY!! She had a small little gathering birthday party on Sunday with cake and ice cream. Yesterday, she had phone calls with birthday wishes from all over the country from 9:30 Am -10pm last night. She had ecards (so many ecards)She had her boyfriend Charlie sing to her on the phone. She had our friends from California Molly and Andy sing to her. It was quite a day . She had some presents in the mail from so many people and more coming!! She even had her teacher(From Last year) stop by the house last night and bring her a present. Lizzy was dressed in her (fancy Nancy Dress LOL )Thank you ALL for what you do and have done for Lizzy. I am truly touched. I still can not believe she is 5!!

 

We leave for Stanford next week. I get to be a bundle of nerves every time we fly.

 

We looking forward to seeing to seeing Molly and Andy in California. They are so much fun and such great people.

 

Thank you MJ for all you do for Lizzy

 

Many Prayers for MJ, Mary Kate, Sarah, Aubrey, Lila and all the kids that are sick.

September 8, 2008

 

I am getting ready to get Lizzy her treatments and I have been thinking about some things. I need to vent some more.
You know there our very bitter people in this SMA World and it upsets me because their children feel how bitter they are.  I am not talking about the  parents that have lost children due to this terrible disease. To lose a child to such a disease would totally tear a person's heart in half.  I am talking about the parents of these kids that are living . It saddens me that a child must feel bad about themselves because every day a parent comments on how mad they are their child has this terrible disease. We hate SMA but we live life to the fullest for Lizzy. We so want to give Lizzy the best quality of living we can.
No one is responsible for this disease and so people need to quit blaming their selves , their spouses and get on with life and do the best job you can do caring for these kids.
Yes, I hope the government passes this bill to help find way to treat and cure this disease !! So many babies and children have passed away. Every time child passes from this disease another piece of my heart hurts.
But ....I am not so absorbed in hating this disease that it takes my passion and my direction away to help Lizzy . I do the best I can for her. She is my focus and all the kids helping the ones that are living, live the best quality of life they can.
I have been judged lately because people say I have "accepted "our life. I  have not accepted it I just do not dwell on it.  I deal with it. I do what I can do for these kids.
I get  VERY upset when parents DO "Nothing "to help these babies /kids.

 

I just do what ever I can do for Elizabeth. To keep her smiling and happy. You know its the" now" they are living . My life is not going to sit still and wait for a cure. Help these kids now with interventions so if a cure or treatment does come we will be ready.
What I am trying to say. Is I do what I can do and make life as happy as possible for Lizzy safely.
She is my life, my heart, my hero and my light.
Please think before you speak negative in front of these kids. They are smarter than you think.
Thank you all that helped me with Lizzy!!
I am so proud of Lizzy and all she can do. Those eyes that smile makes my life worth living. I am NOT afraid to say it either. I will say it again. I AM PROUD OF ELIZABETH AND EVERYTHING SHE CAN DO!!!!
God Bless

 

 

September 7, 2008

I can honestly say Elizabeth is finally over being sick. Wow!! She amazes me. She wants to go outside and swing in her swing and drive her "Purple power chair" . I am back to her regular treatment schedule.
So it looks like our trip to Kentucky is still on. I really think it was the weather that contributed to this illness with Lizzy. I also had a sinus headache for days!!!! Lizzy had been doing great until the day went to the Executive lock up for the MDA the Wed before the telethon. She plugged on the way home. We had to stop and I work on her for a while to get it out. Every time she does this I think I age 10 more years. At least she tells you what she needs. There are many kids that can not talk with this disease. Since then she had plugged almost every day. It was so hot here the high 80s and 90s .
Paul(aka Papa)  was bumped to second shift due to massive lay-off at the job he has been at for 30 years. He is not sleeping well and he is terribly depressed. he was bumped to welding from maintenance mechanic. Poor Papa. Hope this lay off does not last long.
Well time to take Lizzy out-side. Its Beautiful here today.
Many prayers for our sick friends.

 

Please go to this site and sign the petition to help pass this bill. Help save these kids!!!
http://www.petitiontocuresma.com/

 

 

September 2, 2008

The MDA telethon in Peoria ,IL was Sunday and Monday. Lizzy did great but it was a different atmosphere this year with all new people from the MDA. They did raised a lot of money in our area.

 

We just love the WMBD news people. Lizzy loves Bob. He had his 2 week old grandson on the air with him. She likes Chuck too and she met Kurt.

 

Our" Smiling Fighter Princess" is now VERY SICK. Lizzy has a sinus infection. A Bad one. We took Lizzy to see DR. Hough about 3pm yesterday. I dont know how she is going to tolerate more bipap with a sinus infection. So far no extra bipap time will she tolerate except for her normal over night times.
We are hanging out watching movies and reading her Fancy Nancy books over and over . She is miserable. She started Zithermax yesterday. She has a slight fever and both eye is swollen and VERY RED. Blood in her nose and feels like crude. Laying low. She said she had a headache Sunday she said on the way home. Her O2 is pretty good not dipping past 97 but her heart rate is a little higher than normal

 

I have increased treatments to every 3 hours and have her on her miracle formula breast milk , tolerex and water.

 

We have a trip next week to Kentucky and I pray she will be better so we ca go. She is looking forward to seeing MJ and see a few of her friends.
Keep Lizzy in your prayers!!

 

August 29th, 2008
 

Lizzy went to a minor league baseball game(Saturday) and Reed Michael's 17th birthday party. (Sunday).She has had a great SUMMER. One more big trip  to Kentucky and one to Chicago and we will probably be home bound till after winter. She has even been shopping at Walmart! She even had pictures with Senator Rutherford and met him. 

 

Lizzy had a great visit with Dr. Schroth and the Muscle clinic staff. She is very happy to see how great Lizzy is doing. We did fasting amino testing to see how Lizzy is doing and any diet changes. They took 10ccs of blood for that and some other testing DR.Schroth ordered. Lizzy's movement is increased a lot in the passed 6 months. It was over all a GREAT Visit. One of the best ever. Her curve is at 20 degrees and that was still not bad they said but we are watching it close. Lizzy is always wiggling some how so the nutritionist Erin said she thinks Lizzy is burning a lot of cals from all her movement. She is on the high end of cals for SMA but doing great. Still a peanut but she looks bigger than she is. They did her weight twice because they did not believe how much she weighs. They all said she looks great, sounds great and moves great. Lizzy went to MDA lock up in Peoria and had a great time yesterday . She had pics taken with the UAW union President Rick Doty and Jonny Rovatti (Magician) . She stole their hearts .
 

The MDA Telethon is this coming Sunday!!! She is so excited!! She will be aired on WMBD.
She also gets to see her friend Sophia from the Chicago are and staying with her Grandma Pat soon. We also have a trip to Kentucky and get to see lots of Lizzy's friends.This has been a great summer for Lizzy!!
Lizzy is getting her Max Easy (manual ) Chair size 2 FINALLY HOPEFULLY. It may take a few months but its all working now. It was ordered for her almost a year ago and  hopefully it is finally getting taken care of!! I got a call from BL on Tuesday and Lizzy gets the last one. John our National seating is getting it for Lizzy. BL is hoping to get another company to build her the frames but at present Lizzy got the last one since hers was ordered over a year ago. So, I can give back the loaner ones we have from Laura .  Lizzy needs her own. Other kids can use them that have such a tough time like us getting one like we have. Laura is such an awesome lady at SMA Support. She has done so much for Lizzy and many other kids.
 

Things seem to finally to be falling in place finally. Now just trying to get a lift for the van . Papa decided we needed a newer van so we traded in the Kia Sedona about a month ago .  The great thing is the interest rate is so much lower than the Sedona was. We put a lot of miles on the Kia. So we got a Dodge caravan and the room in it is unreal. We can not afford a conversion van for gas reasons but I think this 2006 dodge caravan is just what we needed. Hopefully we can get a lift. I knocked my back out lifting it on WED again trying to help Christen getting it out of the van.
We fly to CA in October 7 and are staying an extra day because the flights were 100+ dollars for that Wed . so I decided that staying a day longer is cheaper than the  tickets a day later. We are taking a late flight that Tuesday.  We can not wait to see Molly and Andy. They live close to Stanford.  They are just the sweetest couple!! We are actually are more looking forward to seeing them more than the appointment with DR.Wang.

 

This is the best summer in years!!

Now Christen and I are planning on dieting next week.
Hope you all enjoying your summer.

 

I just saw an email from a friend that we lost another child to another horrible disease.  I did not know them but it pains my heart to hear of this. May God give this family strength to get through the days ahead. Fly high little one fly free of disease. Breaks my heart

Here is the blog http://www.caringbridge.org/visit/lilieclark 

 

July 5th, 2008

 

Our 4th of July was great.  Hope yours was too!! We went to Dawn and Jeff's at her lake house and had a cook out.  Lizzy had a blast.  Many family members were there. She went all over in her power chair. Lizzy did great!! Caitlyn was on her 4 wheeler and scared the "be jeepers" out of me many times. Lizzy hated the fire-works. She said "They smelled" Leave it to Lizzy to say that. So her and I went inside and watched them on TV.

 

Papa is not walking to well today. Injured himself playing softball. Lizzy told me "He hurt himself and he can not walk"

 

Its been a good summer so far. Allergies have hit us a few times but over all Lizzy has been enjoying it and actually outside in her  power chair several times a week!!

 

Uncle Rory is supposed to be home tonight from Kuwait for a few days. Ariel has been here for a few weeks (his daughter) and has reattached herself to Lizzy.

 

Hopefully next week is the  LAST week for serial casting at Easter Seals. The cost of gas every week is draining us!! Lizzy's foot is doing so much better. The right one is awesome (+5)and that cast has been off for a three weeks.

 

Sophia Doebbert is sick and her Mom Andrea is also sick Many prayers their way.

 

Many Prayers to all the sick kids!!

 

WE will not be going to Stanford again till October.

 

Have a great summer!!!!!

 

June 17,2008

 

We are feeling great after weeks of being sick!

Lizzy has a busy week this week. Easter Seals was Monday and she is finally done with one side but because of being sick and being over stretched we still have one foot still being serial casted . She is a +7 on her good side!!

Today we got Lizzy's Leopard TLSO today. It fits so good but boy has she grown since her last one!! We had a 4 hour MDA visit also today which was a great visit and everyone loves Lizzy !! We have two appts here tomorrow.

Lizzy is Ambassador again for the MDA for our area MDA (Peoria Area), so watch for her on Labor day weekend!!

Bad news I hate to say but we so far can not get help with our fights to Stanford. Mercy Med flight can not help us. I am trying so hard right now and I have a pilot trying to help that is a great guy I emailed. Please pray something pops up or Lizzy will be off her med.

If we had only known we could of had fundraiser or something. It's totally consumed me trying to find resources to help us. So, I have been talking on the phone or sending emails or researching since last Friday! We have to go to Stanford!! 

Lizzy has to stay on the hydroxyurea!  I don't know if she will lose the strength she has if she is off of it.

Many hugs to all and hope you are enjoying the great weather this week.

Prayers for Jacob Goodson!! He is in the hospital again!! Prayers for my brother-in-law Jim who has been very ill!

Pray we find a way to CA for July and October.

 

April 27, 2008

Hello Every-one!!
Sorry no updates for awhile. Let me breathe deep for a second and tell you what has been going on with Lizzy and us.
Great news MJ PURK is FINALLY home from the hospital!! Yeh MJ!!!!!!   Addy is home too and so is Sophia Doebbert!!Yeh!!! 
Rachael my grand-daughter has been having some problems. Liver enzyme problems  and blood in her urine. So prayers her way. They have tested her and one week she is fine and the next week she has problems again.
I have been having some health issues myself but it minor compared to everyone else.

 

Poor Ethan was just taken to Yale. Poor little guy!! Many prayers his way!! He just go out of the hospital,

 

Lizzy has been doing good (No jinxing here.... actually saying how well she has been doing. ) She is such a smart, brave, beautiful girl!!  She is my heart. Growing so fast and you never know what she is going to say.
She is in her power chair 5-6 hours a day most days. If you turn around to fast you might almost fall over her. She has figured out that the power chair is her way to get almost anywhere she wants!! She wants to go upstairs in it but I dont think we will ever be able to afford a lift for her to do that. She is quite talented and maneuvering
her chair. She is pretty good at judging distance .
She has been getting serial casting done on her feet to prevent future surgery (Hopefully).
She had her IEP on Thursday and we have decided on home-schooling . I am going to do it. Scares me to death but.... I think I can. The illnesses out there are so scary and RSV this year was way worse then ever before and still many cases of it out there.  We just did not think it safe either since they pit her in class with kids with behavior disorders. Couple close calls last year. I have been searching and trying to contact IL parents and organizations that home school for the best possible material out there. I want her to have a a Christian influence also in her studies. I am excited to experience this with her.
We are finally getting our kitchen updated for Lizzy. So she can get in and out with out hitting the door way. Getting more cupboard space and a new floor. What a mess.  I had the materials for over a year and they are finally getting it done!! So its kind of crazy around here with half the kitchen floor tore up and part new sub floor in. Slowly but surely it will get done.

 

Ohhhh yes!!  Last weekend we got to meet Steve, Laura and Kaylee Stants. It was so great to finally meet the lady that helped me save my Elizabeth. She is such a great lady!! She is beautiful kind and simply amazing!! 
Hopefully Spring is here !! God Bless!!! 
Hope all is well with you all and have  a great Spring/Summer!!

March 10, 2008

First thing I want to say in my update is please say prayers for our friend MJ. She has been in the hospital 6 weeks now. She sounds like she is doing better but MJ please hurry and get better we miss you.  While saying prayers almost every night Lizzy keeps asking "why is MJ still in the hospital" . I keep saying she is still sick. Lizzy says" MJ has been sick a long time and she hopes she gets better soon". She said "tell her take medicine." You are our hero MJ and we need you to get better !!  We Love you and we miss you!! We miss Brenda too!!

 

Elizabeth was sick last week with fever and plugging. She is doing a lot better. We had her on Zithromax for 4 days from Dr. Schroth. She improved quickly with treatments every 3 hours. 

 

We had went to Madison for a Feb. 29th appointment with Dr. Schroth and it went very well. Lizzy is still a peanut but I guess that is just Lizzy. She said" Lizzy  has had more expansion in her lungs and is doing great"  She measures her chest and check Lizzy very well.

Lizzy drove her chair up and down the halls and to the gift shop.

 

Lizzy got a lap top last week and we are working on getting her a mouse. Her whole world will change.

 

We can not wait to see Molly and Andy in CA!!  It will be great to get away after the long winter we have had here. I just pray Lizzy stays healthy before and while we are out there and home. She got her last RSV shot for the season today.

 

Keep us on your prayers this week for a safe trip to CA and back home.
 

Feb. 15, 2008
 

Its been a crazy winter! Flooding , freezing cold weather and snow. Twenty-five percent of our town flooded in Jan . Then 3 weeks later another flooding but not as bad.  We were lucky we only got a little water in the basement that went straight down the drain and some dampness.

 

Lizzy has been sick a few times this season. She has had  plugs, junk in her trunk but over all the best winter yet.  Believe it or not.  She did run a fever because of an ear infection a few weeks back but nothing I have not been able to handle at home.  We live in our " winter bubble" We stay home most of the time.

 

I actually got sick last Friday and left town with Paul for the week-end.  First time in many years.  Only place I had been was VOTING (a week ago Tuesday)  a block away since the first part of January!   I woke up with a fever on Friday last week  and sore throat and got the heck out of Dodge.  I have not left Lizzy since Paul had a stroke two years ago. It was hard to leave her but getting Lizzy  sick would of been worse. Paul had a conference for work in Iowa. I was not much company though but I did get to rest. We were back Sunday but I did not get around Lizzy much until Monday. I was totally fine as of Monday.

Many for kids we know have been in the hospital with RSV and MJ is still in the hospital with the flu .  MJ has been so sick we have been so worried about her.

Sophia Doebbert got really sick with RSV and  was in the hospital in Minneapolis,MN and was life flighted to Madison.  It was a so scary for her and the whole family. Dr.Schroth and UW hospital PCIU  worked their magic with our favorite nurse Pat and Sophia is now home. Addison was also there also with RSV and home now.

Emily, Kyle  and Jenna  also have encountered RSV this season and I do not remember how many more.

We are "home bound " from public places from October-March every year now to keep Lizzy well.

 Christen canceled our trip to Stanford first part of February because Lizzy was not base-line and she was afraid she would catch RSV or the flu since it is the peak of the season.  Even though Lizzy gets a RSV shot she can still contact RSV but not as severe.

Its been the worst year for illnesses. We will fly out March 13 to Stanford.

 

Lizzy had a great Valentines Day. She loved all the cards she got and Andy and Molly sent her a DVD. They are such wonderful friends. We can not wait to see them. 

 

Lizzy got cards from all of the US and Canada.

 

Many prayers to ALL the sick kids !
 

Dec. 14, 2007

 

Elizabeth has been doing pretty well since  her last illness. It took many weeks to get her back to base-line but she did it!! What a fighter she is!!

She is enjoying the holiday season. She did get two trips out shopping and she dearly loved it. She went to a Christmas program tonight for cousin Robby and absolutely loved it and sang with the kids (in the bleachers watching).  You hear Elizabeth singing on the video we did tonight. LOL . She has been getting excited at the gifts coming in the mail. A few very good friends have sent her wonderful gifts . She gets so excited when she gets something in the mail. We have also got Christmas cards from all over the world with some pictures! She loves everyone and has to hold the cards for a while and ask questions about the kids then she lets me put the cards on the archway. She doesn't miss a thing!!

She started serial casting and so far has done very well with it. I was totally shocked at the results. Her bad foot is no longer puffy and she fit right into her AFO's. Amazing. She takes them off the Sunday before the Monday new casting but last week the weather kept us from going so she has had them off a week but will start again on Monday.

We are still fighting to get her RSV shot. We travel to Stanford in February and she needs the shot before she goes. DR.Schroth and DR. Hough have both sent letters in and we are waiting to hear again if she got approved or not.

I need to thank the people that have helped us sending supplies when we were in need and all the offers to help with more OMG.  Thank you. Truly you are wonderful and thank you so very much!!   Peg Senator's Rutherford's asst is so great at trying to help Lizzy get what she needs.

You are so good to Lizzy. Never in my life have I met more caring people.

Well many prayers for the kids that have been feeling ill or had surgeries.

We are truly blessed to have Elizabeth in our life . She is just the coolest kid.

Thank you all  so very much for being in our life.

Merry Christmas to you all and have a Happy Healthy New Year.

 

Nov. 16, 2007
 

Elizabeth has been sick since  Nov.2.  She had " croup" and it was terrible. I believe she picked up the virus from school.  I did round the clock treatments until Tuesday this week. She had mucus plugs every day almost. I had to do mouth to mouth on her the first night because she could not breathe during a treatment because she had so much gunk in her throat. . Got her to cough with her cough machine but she scared me to death.  We got her on Zithermax right away next morning. She had no voice for about 4 days.  I had her every 3 hour treatments until last week-end  and extra bipap.   Then I  was doing 3 treatments during the day. Thought she was well  and  then spiked a fever yesterday. Took her to DR. Hough and she has middle ear infection. She is such a trooper. She is doing better today but she has had a heck of a time. Welcome to winter in IL .

I also learned that when she can not breathe like that  to put the cough machine on exhale and it also blow breaths in her. No O2 was needed. We got to stay at home . I actually handled it. I did not sleep much. Thank goodness for the IPV and Elizabeth's strength. She has not been this sick since March 2005.

 

The state is still denying Lizzy's RSV shot. She needs this shot and I have contacted my senator's assistant again.  Peg(Senator Rutherford's asst) said she is waiting to hear back from them.  She fights so hard for Lizzy. Dr. Hough has tried so hard to get this for her too. Christen contacted the company and I have data now for the shot over the age 2. I hope this helps. We have letters of medical need and still they say NO!

 

We are trying to get her a manual chair since she has grown out of hers but we are not getting very far.  I guess the pillows in her manual chair will have to work until she is 5 if we can not get her one. I am still trying though. The Max Easy  size 2 would be the best one for her. No vender in our area will even try to submit the order. I have been talking to BL with Exomotion and she said hopefully she can help us find funding after its denied at state level.

 

Elizabeth was suppose to start serial casting for her bad foot but.... we had to cancel due to her illness.

 

Elizabeth and I have not left the house except to see the doctor.

 

Many prayers for all the sick kiddos and a Great Job to Jennifer Goodson for her great doctor visit today. Its great to prove to local doctors how great these kids can do. It renews their way of thinking and a "glimmer" of hope hits their hearts.

 

Oct. 08, 2007

 

We are home from Elizabeth's last trial visit to Stanford. She has completed it!!!  It took a long time but she finally did it!!!
We will continue to see DR.Wang every 4-5 months.
The trip started out with drama when Christen some how forgot the cough asst mask when wet the airport over 100 miles from home. My fault also because I should of checked myself when she said she had it. So Christen calls Apria in Peoria,IL and they sent her call to our  Apria RT . She proceeded to tell Christen "That the machine was purchased and they would not get her a mask or call out to CA to help us get one". "Christen said" I will pay cash for it  or bill me" and the RT says "NO... They would not help us even though this is a" life threatening situation" Elizabeth has to have a cough asst mask no matter what.  Christen said "you are telling me that you will not help Elizabeth and we are just "Screwed". The RT from Apria said" Yes... That it was your fault for forgetting it and"  NOPE" they were not going to help us get one and we could always  switch to another medical  supply company" . She said" she didn't care if we found another medical provider". Oh my..... what we have to deal with when it comes to Elizabeth's medical needs is just uncalled for. RUDE, MEAN  and UNCARING people in the medical supply companies. It just is not right. SMA kids  parents/caregivers all over the country have to deal with this kind of treatment and its unjustified. These kids are the bravest, strongest  courageous most beautiful children and they have to fight to live.   Granted it was a mistake we made but the RT's attitude was unethical besides rude. It took over a year to even get someone to take her case to get Elizabeth the machines she needed. Thank goodness we have one person that understands Elizabeth's needs and that is Jerri from the Streator Branch. She happen to not be in that day.
 

Christen called Stanford talked to Virginia. DR.Wang went and found DR. Ewing in ICU at Lucille Packard and told her what we needed and he got us the 2 masks some tubing and a connector. The Man is a Saint!!!!   He understood Elizabeth's need. OMG... He is the "Bomb" Thank you DR.Wang!!!!! 

Molly and Andy our good friends that picked us up at the airport picked it up before we landed in San Francisco!! They were so wonderful to do that for Elizabeth. They are the best!!!!!!
Elizabeth did great on the plane and almost the whole trip .
 

The doctors visits on Thursday went good. The Mune test with DR.Soo went good. Elizabeth was her usual ornery sweet self. She is almost 24 pounds....... whoooooo hoooooo 23 pounds 8 ounces...... she is almost 39 inches tall also. She laughed at DR.Wang and we told him stories about her and it was a great visit. He would laugh at her and she would smile and just be her charming self. She kept showing off of course. The blood test though is never easy for her it causes her vasovagal. DR.Schroth told us what it was called when it happened at UW in August.
 

We met with Gracee  on WED  night, Jacob on Friday morning and Ally at the Olive Garden on Friday. Ian was there also on Thursday and was so happy to see Lizzy. Her and Ian like each other and played together. Ian got her this cute doll that Lizzy has not put down since with a pink leopard skirt.

Jacob got Lizzy a doggy bracelet(Cute as heck)  and some beautiful Dora "Genie" Pajamas.
 

Molly and Andy had a party  for Lizzy and  lunch on Friday afternoon. They are so great to us !!  We just love them. They got Lizzy a puppy in a  pink cloth cage with all kinds of things like small pillow hair dryer, cell phone and a lot of accessories .  So" girly " so Elizabeth!!  Elizabeth loves it!!  They had balloons for her and a gorgeous table . The pasta salad  Molly made was to die for. It was fantastic. Then we had to go back to our room hurry and get ready for Olive Garden with DR.Wang and some of the families in the trial. That was interesting. It was good to talk to DR.Wang out of the office. I did not do much talking but I did ask him a few questions. I did comment a few times.  I  was much  too interested in the Ally, Jacob and Lizzy . I just love these kids.
 

DR.Wang was so great and so happy Elizabeth is doing so well. I am glad we will still be seeing him.
Molly and Andy took us to the airport on Saturday to fly home and it was a great trip till we got about 10 minutes from home in the van and Lizzy's had gotten a plug.  Poor Lizzy. I got it out and she has been doing okay but  she has some  junk  still coming out of her (white) and has been doing pretty good since that . I am glad we are home today just to RELAX!!
 

She is right now licking "Pop Rockets"She loves them thanks to Jaime her OT.
 

Thank you to all the remembered her 4th birthday. Every birthday is a milestone for her. She is just an amazing kid that her strength,  courage and determination keeps me going. You all made it special for her also!!

  

Elizabeth's party here was the Saturday of her birthday Sept. 29 at Mario's with Pizza and cake. It was a "Fancy Nancy"  party with about 50 people.  Ingrid (Paul's  sister) her boyfriend Terry , then  Katherine(sister from Germany) and her husband Winfred from Germany showed up with all kinds of stuff for my princess.  Oh my gosh I was so touched by the love in their eyes for Elizabeth. That was such a surprise!!   I was  so glad to finally meet them . They are so kind and caring!! The Baxter's are so good to Lizzy and they are my oldest daughter's inlaws.   It was a great party. Lizzy got so much stuff and had a magical time!!

She also got some packages at home when we got back from CA.

 

She is 4 years old what a milestone for her.

 

Prayers for  MJ, Sophia Doebbert, Kaige Dunham, Kaiden Wills, Skylar S and ALL the sick kids !!!!! 

September 21, 2007

 

Its been awhile since I updated. Lizzy had some allergy issues last week but she is fine. She loves school and is growing and doing well.

She had 3 pages of blood testing in Madison ,WI and the test were all normal. She fasted about 5 hours and they took 10ccs of blood. She is a bit low for Carnitine but every thing else was great. She has not been able to handle an upped  dose of her Carnitor but I am trying so hard to get her get to handle a bit more.

 

Elizabeth will be 4 years old in a week and a day!! She is getting so big. She has truly changed my life and my way of thinking. Nothing in this life is that bad knowing what she goes through on a daily basis. Her strength and determination exceeds any expectations any of us had for her. She is a my hero, my strength and my heart. She is a great kid and has so much love to give. She is an amazing little girl.

 

I hit some more brick walls . Our local pharmacy that supplies Elizabeth's Tolerex has decided she can not get her Tolerex there anymore because they are not getting paid the amount they need from Elizabeth's insurance. So, we are taking other routes hoping to get it from the company that does her feeding pump supplies. They tell us this after we go to pick it up.... Good thing we have  a bit extra to get us through until we get this taken care of. My advice is always have a extra of everything for times like this.

The state decided to bump the RSV shot back a month so I had to contact our Senator's asst and try to get this  taken care off. Why is it so hard to get these kids the things they need? Its always such  a struggle. Its like you take 1 step forward and then two steps back. WHY? Its emotionally draining and so frustrating to always have to deal with things. I wish I would win the lottery. I would give these kids everything they need when they are pushed around and messed with from all the political hog wash. Its not fair.....

 

Trip to Stanford is the 3rd and home the 6th. of October. The VERY last one for the trial. I know we want to keep her on the trial drug as she has done well with it.  Now  just figuring out a way to do that.

Many hugs to sick kids, many happy birthdays to those with birthdays and many good thoughts to those families with Angel days and Angel birthdays.  
 

August 24, 2007

 

Well our great summer is coming to an end. We have met so many great people, seen so many relatives , went so many places and its been the best summer Elizabeth has ever had. I can even tell you how many great people we have met!!

A special thank you to Molly and Andy in Palo Alto, CA (Sophia Doebbert's great Aunt and Uncle )for picking us up from the airport, going to Lizzy's appointment with us , taking Christen to find a inverter for our Marine battery so we could fly home safely with Lizzy on Bipap , dinner and then taking us back to the airport. My gosh you two are the best!! We so happy to know you . I could not even begin to thank you for as much gratitude as I feel because I would never stop thanking you!!!!!!!  Special thoughts and thanks to Tony and Pam also. The lawyers from New York that were so kind and help us so much !!!! I can not believe there are such kind people out there. The whole time we have been flying there has only been a few people that even taken an interest in what we do and Elizabeth but this last trip we met two very special people besides Andy and Molly . One time Mark a friend and neighbor to Molly and Andy picked us up and that was also so great and we thank him also. No one knows just  how much it means to have people actually go out of there way to help us when we fly to CA.

 

The  UW Muscle clinic appointment went really well. DR. Schroth was amazed at Elizabeth's  strength and said she is getting stronger. It was great to know she thinks we are doing a great job with Lizzy. It was our best ever visit.

 

Elizabeth started getting sick last  Saturday with higher heart rate. Then on Sunday she dropped to low 90s O2 and woke up with 102 fever. Her heart rate was so high. I got her on an antibiotic from DR. Rock (UW) but her fever and high rate continued all day Sunday but finally dropped on Monday. She had every three hour treatments around the clock until Tuesday night. She still has some junk coming out but  overall she is doing very well. O2 has been great and so has her heart rate still doing extra treatments during the day .

 

Bernie our good friend from Canada has been sick and in the hospital so many special prayers for him. We are lighting a candle for him and saying a prayer at:

http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=SMA  

 

Next trip to Stanford is Oct. 3rd and our appointment is the 4th. It will be our last  one in the trial.

 

If we have to keep on going out to Stanford every 3 -4 months like Dr. Wang wants I will have to get a job .  Its not that I do not want a job its that I worry about Elizabeth's care. I have been doing most of her care since she was really little and I worry too much about her needs.  No one knows  Lizzy like I do but you have to do what you have to do so we can pay for her office visits and her medicine.  

 

The MDA  telethon is next week-end and we are all excited about that !!

 

Hope everyone had a good summer as we did!

 

Its been raining and storming here all week. Lots of flooding around us.

 

Elizabeth will be starting school after labor day.

 

Keep Elizabeth in your prayers.

 

August 13, 2007
 

Well this trip was quite different than normal. We met a couple lawyers from New York at the Chicago Airport that helped us so much with Elizabeth's carry on equipment on and off the plane. Tony and Pam I think their names were. Just the most kindest people we have ever met on a trip. They had such good hearts and Elizabeth found her way to their hearts also. Hopefully they will keep in touch with us.

This trip was kind of scary at first (Due to the inverter) but the best time ever we had staying in CA.  We were having problems before we left with the inverter that goes on Elizabeth's marine battery for her battery on board the plane. Well the medical supply company we use refused ......... yes .....refused to get us another one here and in CA. The medical  equipment supply told us to go buy one. Like.....  alrighty then.... Like we can just go buy one. We budget everything because of our trips to Stanford.   Which...... a medial company that does not make sure they equipment works properly should be in deep trouble. Isn't their integrity involved?  We had to buy one before we left  IL and went on the recommendations of our Apria person. It blew (after checking it the the day before and it worked for 20 minutes with the bipap) WITH IN 2 MINS AFTER our plane was in the AIR. So, Lizzy had to fly with out bipap and she did really well. No drama at all.  I was a basket case and kept hoping and praying hard she would be okay. We got off the flight she was still 98 o2 and resp rate was great and she was talking away. Got to Ronald McDonald House and I did a Pulmozine, coughs ,IPV and she was fine...... NO problems (Thank God) and next day Dr. Wang said her lungs are stronger than ever!!!!!!! Also said she is stronger than ever. Her weight has not changed much.

The TV crew were great. The ABC news reporter was so great. She had tears in her eyes as Christen and I told our story. We still have not seen it yet. We missed it Friday night and Saturday we were flying on our way home when it aired. I hope it was good. It was on the trial drug Elizabeth is on.

They need to do a TV spot about the brick walls and the non-cooperation medical equipment companies give you. They endangered Elizabeth life not providing Elizabeth what she needed to fly safely.

Andrea Doebbert's (Sophia Type 1)Aunt and Uncle adopted us!!  They live in Palo Alto They are so great. Took us to their beautiful home for pizza, helped Christen find an inverter that would work with bipap that could afford that actually work and Andy (Andrea's uncle) rigged the inverter up with the next door neighbor so all we had to do was plug it in on the flight. WE LOVE THEM!!!!!!! They also talked to DR.Wang and asked a few questions.

Oh and we had great seats coming home....... and the inverter worked well that Andy had fixed up for Lizzy.

A wonderful trip.  Great seats coming home!!!!!

Only thing....... DR.Wang is  still making us come out every 3-4 months after the Sept visit even though Elizabeth is done with the trial...... He will not give her the med with out him seeing her. We have to figure out a way to afford the office visits and the med. Maybe another fund raiser?   

My brother was here and took us out to eat yesterday . He had his wife and his inlaws with him. The inlaws are from South Africa. I love their accents..... Great to see him. Carlene and I got to actually sit on the patio and talk ALONE. It was great. I miss my brother and his wife Carlene so much. They left today..... We don't do goodbyes.... they just tear us up!!

Well off to UW tomorrow for out visit at 8:00am on Wed. We are always going some where it seems . We will be back home on Thursday.

 

July 25, 2007

 

Tomorrow Aunt Rita is coming here. She is flying here from Florida. She loves Lizzy.

We are so excited!! We have not seen her since Lizzy's MAW trip last October.

 

We have had Reed, Robbie and Rachael (Elizabeth's cousins) here a lot this summer and Elizabeth is just loving it.

 

Caitlyn had her birthday party last weekend at the Lake house .Caitlyn turned 5 the 19th of July (The same birthday as Nina) .Elizabeth just loved the party. We kept her pretty distant from the other kids and no one in her face or touching her. Elizabeth and Nina both got a little sun. Nina was sun burnt for 3 days!!

 

Lizzy is growing and getting stronger every day. She is so amazing. She talks more than ever and is so INDEPENDENT. She is such a neat kid. She has a will all her own. I watched her yesterday pick up something on the side  in her tiger chair in the side and maneuver it all the way up so she could see it and put it in her hand. Simply amazing. I keep saying it because she is!!!!!

 

We started going to a community support group last night parents/caregivers of handicapped children that Lizzy's  O/T  Jaime has put together. It was great meeting other people who have faced some of the same things we have. We met and shared info , resources and cried.
Lizzy has done pretty well lately.

 

Our house is going through some major updates. We are putting in new walls in (Taking mortar and wall-paper out and DRY WALL IN) , painting and updating the house. Hopefully my new kitchen floor will be in soon too!!  I do not living like this  but when its all done it will be worth it.

I have not been online much because of being busy or at night Lizzy and I hang out upstairs while they work on the walls in the evening. Hopefully they will be done by this week-end at least with the living room.

 

Still no word on Elizabeth's ramp for the front of the house.

 

We were hoping it would be done before school starts but it doesn't look that way.
 

Dawn has her surgery next week. Many prayers for her.

 

Uncle Rory will be here in August too!! Too bad all of the family can not be here together at once.
Hope you are enjoying your summer! We have been gone more this year than ever. We have had so much joy meeting people and going places.

 

Many more trips in August  too. Stanford, Madison WI and Elizabeth's MDA appt.

 

Many prayers for Anna (Demi's Mom). She called me tonight and she is having a hard time since Demi earned her wings in May. Its so sad. Demi was only 18 months old.  My heart hurt as I tried to comfort Anna. I felt her pain in her voice when talking about what happened to her baby girl.

 

The decisions we make is what we think as parents as caregivers is the best choice for our child/grandchildren as we see and feel it. No one lives our life.... but us ....so no one knows what we feel but our-selves.  Not everyone can live this life. It takes deep strength just for us to do what we do on a daily basis. Some people just can not do it.  I admire several parents who have learned fast and "Got It". Others still are struggling with their thoughts and emotions dealing with this awful disease and never quite"Get it" .

 

I hate SMA and I will fight for Elizabeth with every strength I have. These kids are the bravest kids I know to live with this disease and still smile every day.  Elizabeth has a wonderful quality of life and that is because she is such a amazing child and treated like a normal kid with special care.

 

I apologize if you have tried to email and I have not written back. I have been so busy and I try to stay off pc because I have not had the time to respond. This is only for a short time. We should be done with all this in about a week I hope. If you tried calling please try again.

 

I am here for any-one that may have questions about any thing.  So call me or email me if you need me. No questions are stupid when living with a child with disabilities.

July 13, 2007

June 26, 2007

June 18, 2007

Click here to read the latest news on SMA Research!

April 4, 2007

March 17, 2007

We are HOME!!  We come back to cold weather again. brrr    

March 3, 2007

March 1, 2007

January 27, 2007

Elizabeth made the front of Saturday edition of the Leader with the Mayor! Click here to read the article!

January 15, 2007

Lizzy is doing real well after this last bad sickness. Stuffy nose a bit but that is it. I have it at both ends.... plus knocked my back out again. Christen  went and got Elizabeth  Annah's old Koala chair and we are so excited. We have to get new batteries and updates but over all it will work!! "Lizzy will be mobile" in just a matter of days. We can engineer some things to get it to work soon as we get the batteries and a new charger. The MDA is helping us get what we need to get her rolling. Lizzy keeps staring at "She saying that's mine..... That is my Chair..... " "My Mom bought it." I explained to her its was given to her from Annah until she gets her own.( when and where that is going to happen).She kept asking Papa yesterday if she was done yet when he had tore it apart to see clean it and see what electrical things it needs.  So she knows what it does!! She remembers!!!!!!!!!

January 3, 2007

Then our streak of bad luck started. We had to get a new boiler/heater,the van needed worked on, Nana slipped down the stairs on Halloween, Mommy hurt her back and knee taking equipment up stairs, The drains in the basement started backing up and our trip Stanford was canceled due to Christen hurting herself.   What next? A new boiler is getting put in next week, and Papa is fixing the drains.

October 5, 2006

**IMPORTANT UPDATE**
September 28, 2006

Elizabeth was in the ISU newspaper! Click HERE to read the article!