Read Brianna's Journal

Our Journal...

Date:: September 05, 2008

Today

Brianna started kindergarten this week. She has a great one on one with her. She will go to school for 5 days a week until Oct. then she will be homebound until April. I didn't want her there for flu season. I have done a great job keeping her out of the hospital and I don't want that to change now. So she is loving school but hates waking so early every morning. Wednesday was our first day apart. My mom had surgery that day aswell so that kinda kept my mind off of Brianna being at school without me. I was still worried though. This was really hard on me for we have not been apart since her DX. I know this will do her good and me as well. We have had major issues trying to get her to school. My van blew up two weeks ago so I have no car. I have great friends that have been letting me use theirs. and thank you sooo much. What would I do without you Jason and April??? Since we live on a private dr. school refuses to send a bus to get her and I have no way of getting her powerchair to school. So for now she has her maual chair, which she hates. and who can blame her? So we are working as hard as we can trying to find a way to get a van, trying all of our options, scrapping every penny that we have to try to come up with a down payment. so I hope soon that we have one.

Date:: September 30, 2007

Today

We are Back!! We arrived back at home yesterday morning around 10:30. Brianna had a WONDERFUL time. She got to meet Cinderella and all the other princess. You should have seen how her face just lit up when Cinderella talked to her. Of course we have it on DVD. It will be a moment we will never forget. Bri rode her first rollercoaster at Sea World. No fear in this child at all. I was scared to death and didn't know if I was going to be able to do it a 2nd time. LOL But she got off of there and held her hand out and said Moma I want to ride 5 more times. LOL That baby girl of mine is so precious. The village that we got to stay in was awesome. There was so much to do there. The kids saw Santa on Thursday and got a gift from him and we got to meet many characters there also. I just can't explain how nice it was to see my baby girl enjoy herself so much. We had a wonderful time!!!!!!!!!!!

Date:: September 19, 2007

Today

We will be off on Friday morning to Walt Disney World!!!!!!!!!!!!!!!!!!!!! Brianna is so excited, well we all are, i feel like a kid again. It's going to be soo much fun for our family. Thanks to Make A Wish for granting my baby girl her wish. I will be sure to update when we get back and tell ya about all the fun we had!!

Date:: August 28, 2007

Today

Brianna was in her first beauty pageant on Saturday. She was absolutely gorgeous. She won best smile and was 2nd runner up. Not bad for her first try and not to mention that I did her hair. She wore a pretty yellow and white dress made by Merilee (her OT). A very BIG thank you Merilee. I was amazed by this dress that she made for her. I wish I was talented like that. We are looking forward to the next one which is on Sept.15th. Hope we get to attend that one also. It's so much fun. Also we are heading to the beach this weekend. Can't wait!! Everyone have a safe Labor Day!

Date:: July 24, 2007

Today

Sorry I have been slack and have not updated in a while. But Brianna is doing well. We are having problems with her chair and someone should be here any minute to fix it. So in the last couple of months Bri has been granted her wish from Make-A-Wish. So we will be going to meet Cinderella in September. She is sooo excited and cannot wait to go. Bri was also crowned Miss Dream Angel 2007 thanks to NC Tarheel Pageant. I'll try to get pictures on here soon...... Well we were planning a day in the pool today but it looks cool and cloudy outside so I dunno what we'll do now. Oh well

Date:: May 16, 2007

Today

My baby girl turned 4 years old on Sunday!! I can't believe how she is growing. Seems just like yesterday she came home from the hospital! What a joy she has been to me. I have loved every minute with you baby girl! Bri had a party on Saturday. Cinderella was the theme. She got lots of great presents and thanks to everyone who made her day special!

Date:: April 30, 2007

Today

Brianna has been sick all day. She woke this morning at 6:15 throwing up and has thrown up thru out the day. She is complaining of her stomach hurting. It's pretty bad, she just cries out so loud. My poor baby girl. Dr. said it was a virus and nothing they can do. Just gotta make sure she stays hydrated. Don't wanna be back at the hospital no time soon, although she was wanting to go there today. Please keep Bri in your thoughts and prayers. And also Emma, a little girl who also has SMA, is sick with a bad cold, so please think of her also!

Date:: March 28, 2007

Today

We went back to Duke yesterday to get Bri's new back brace. She is suppose to wear it half the day and at night while she sleeps. I'm not putting it on her at night yet until she gets use to it. I so hate seeing her in this thing. She is so unhappy in it. Today we made it 1 hr and about 20 minutes in it. Then she started crying, then we both started crying. I can not handle her being so miserable and yet knowing that it will help her so much. It hurts sooo bad. I need prayers for the both of us. For her to be able to get use to this brace with ease and for me to be strong enough to say you have to keep it on Brianna! I will keep you updated on how things go!

Date:: March 08, 2007

Today

Hello to everyone. Hope everyone is well although it seems like everyone we know is sick, beside us and I hope it stays that way, not that everyone stays sick but that we stay well. We got the news that we will FINALLY gets a pulse ox. Brianna's peds.DR. got it for us after I have asked her lung Dr. several times for one and he said it would never get approved. This will let me know her oxygen level while she sleeps and other times when needed. Kinda scared of what it might tell me but I need to know. So let's just pray that it stays normal. Please pray for her!

Date:: March 08, 2007

Today

Date:: February 19, 2007

Today

Brianna finally got her cast off today. Eeeewwww what stinky feet did she have. Sha was soo happy to finally get in the bath tub and play. I was too. Bath time was a lot easier. Washing her hair in the tub was even better. It wasn't so tangled tonight. I had about three inches cut off of her hair on Thursday. Can't even tell it. Thats how much hair this child has. But back to her feet. Cindy was so excited about how much range we got back into her ankles. I am so proud of Bri for not fussing the first time about her cast. She did great. And so far with her braces she is doing great also. I am so proud babygirl! Bri got a little stuffy last week, but didn't go no futher. Thank you Lord. She never really felt bad just really stuffy. But she is all clear now.

Date:: January 29, 2007

Today

We recieved a very special gift yesterday from Cole's Quilts! Yes, Brianna got her quilt yesterday. It is so beautiful. We love it. It is tooo pretty for use, so it will be framed and put up as soon as possible. Bri was so mad at me last night because I would not let her lay on it. Thank you to everyone who did a square for my angels quilt! Words just can't describe it. Brianna had to have cast put on her legs today,to get some range back into her legs and ankles. Can anyone guess what color she picked out?? Do you give up?? P-I-N-K of course. She said next time she will get yellow. She will wear the pink ones for a week (if we survive) and then they will be cut off and another set will be put on for another week. We will do this 3 times. I really thought she would put up a fight but she was excellant. Cindy told her that mommy could not take these of so not to give me a hard time. As soon as we got in the van she said" mommy can we take these off when we get home?" I said no baby and she hasn't said anything else about it. Just waiting to see what the night has in store for us. I hope she won't be to whinny about it. Our power went out last night b/c of the wind i guess. It was out for 3 hours and boy was it cold in here. The coldest night of the winter so far and no heat. Hope my angel don't get sick. i have been coughing and have a sore throat, maybe that will be all, and not get worse.

Date:: January 13, 2007

Today

So we had the sleep study last night with her brace on. Wasn't so good. I had to sing her to sleep (You Are My Sunshine) over and over until she went to sleep. With us being watched and heard, I'm sure they got tired of my singing!! It was probley 12 when she went to sleep. Then she woke up every few minutes crying saying her back hurt. This brace is very tight and i can only imagine how it feels. She was very sweaty on her back under the brace. She was miserable. So after about 2 hours of this I said enough was enough and we went home. But what was I to do? It is so hard, do I make each night unconfortable for her or do i not let her wear this brace and her back be all messed up and have to do surgery later and then maybe not make it through surgery. I just want all her pain taken away and still be here with us. It hurts soo bad to see her like this. GOD, PLEASE HEAL MY ANGEL!

Date:: December 26, 2006

Today

Hope everyone had a Merry Christmas! Brianna and Brandon did! They were so excited Christmas morning to see what Santa had brought them. They both got bikes. We will have to makes adjustments to Bri's but I think it's perfect for her. Bri got a stovetop and food to make mommy something to eat.She got some new slippers, polly pocket cruise ship,V smile game system and a whole buch of other stuff(moma just can't remember!) Brandon got a bikr, inline skates,heeley(shoes w/Wheels),cell phone,robopet, and other stuff. Brandon and Brianna got together a dvd player for the van and 3 movies! They had a great Christmas. They are so special!

Date:: December 11, 2006

Today

Sorry it has been sooo long since I wrote in Bri's journal.Brianna is doing well. She is eating better still not back to normal but better. We have been having issues with the back brace that she got in Oct. She only wore it a few night cause I could tell she wasn't breathing normally. So anyway we went back to the Dr and he pretty much was a jerk, we took Bri's PT with us so she would know what to talk about with him. Thanks Melody! But he said that if breathing was an issue then we needed to get a pulse ox and see if it really was cause you know, I don't know what normal breathing is for my daughter, so he thinks. I have tried to get a pulse ox for her and no one will get her one because she is not on any type of oxygen. Then he said if it was an issue then there was no other options that her curve would just get worse. Sounds like a jerk huh, he was and he was not happy that her PT was with us. But other than that my baby girl is good. She is excited about Christmas and can't wait!

Date:: October 29, 2006

Today

Brianna is starting to show signs of a cold. Her nose is stuffy and she is coughing a little bit. I will probably take her in to the Dr. in the morning just to make sure her lungs are clear. Please keep her in your thoughts and prayers.

Date:: October 06, 2006

Today

Brianna got to go see Barney Live today!! She kept on saying, "Mommy I am so excited!" It brought tears to my eyes just seeing her so happy. She had a great time. She wanted to go hug Barney and didn't understand why we couldn't go down there to where he was. Eating is still not going so well. She has ate a little bit today but not much. I just pray that it gets better. Please keep her in your thoughts and prayers!

Date:: September 24, 2006

Today

Brianna is doing better although we are still having eating problems. She is eating a lot better than she was. She still is having difficulty swallowing. So please just keep praying that she gets better. I will keep everyone posted!!!!

Date:: September 20, 2006

Today

Brianna was taken to the hospital on Saturday. She was really dehydrated. We had a swallow study, it was the same as the last time two years ago. So they think it may be acid reflux and that it was she is being treated for. We got to come home yesterday. It was really scary on Sat. I thought I was losing my baby girl. Thank you to everyone who has prayed for my angel. Thank you to everyone that was there with us. Trying to get her take the meds. is a real chore. She is trying to eat a little bit, she usually has to chase her food with drink to swallow. i don't think that is good. But at least she is trying to eat again.

Date:: September 10, 2006

Today

Brianna is starting to have difficulty swallowing. About 2 weeks ago she started holding food in her mouth for hours. Now she is chewing the food (having no problem chewing her food) and wanting to spit it out. We talked to the OT about this and she is going to get a swallow study scheduled. Brianna has had no problems like this before. It really scares me, I knew this would come but it I didn't think it would be this soon. The past 2 days she has ate really nothing just a bite here and there and then she says she is done. So I hope we get this done SOON. Please pray for my little Angel. I will update as soon as I know something. Thanks for all the prayers!!!

Date:: August 25, 2006

Today

Well we saw the "spine Dr." today. Bri has a 25 degree curve in the lower part of her back. She has not progressed any since June, which is great! They seem to think she is to little for a body brace for all day, and I really don't think she will tolerate it anyway, so they are gonna try to use a cast and make her a brace to wear at night. I hope that works well with her. It's not gonna fix the curve but hopefully slow things down. They said surgery will be in our future probley in 5 years and then she will have to have it done every 6 months. I just can't see her going thru this. Right now I am sooo mad the the ---- world because my precious baby girl will have to go thru this. I would give anything to take her place. I want a cure NOW for this. She don't deserve this. But all I can do is pray, I feel so useless. I am her mommy and mommys are suppose to protect their babies, take the scary things away, I can't do that. It breaks my heart for to ask to walk and when she says I'm gonna walk when i get big just like my BoBo, (her brother) When we are at family gatherings and she just wants to be a kid and play and run and none of the other kids play with her because she can't do the things that they can. But ya know all in all she is a happy girl. She flies in thru here in her wheelchair and she say "what a great day!" I just wanna pick her up and sqeeze her. Okay sorry I had to vent but ya know, you will never know the pain unless your a SMA mommy. PLEASE PRAY FOR A CURE SOON AND PRAY FOR MY ANGEL!

Date:: August 22, 2006

Today

Hello! Sorry it has been a while since we updated. Brianna is doing very well. (knock on wood and pray to the good Lord above.) Brandon has started back to school so she is lost without him. We were saden to hear that another angel has earned her wings. This breaks my heart so much and I just pray for her family, to keep them strong because I know without my little girl I WILL go insane. My kids are my life and even though I know she will be so much better off I don't think I'll ever be able to let her go.

Date:: July 30, 2006

Today

Brianna is getting a little stopped up, so please pray that she is not getting sick, other than that Brianna is doing good. She went on her first camping trip last weekend. She gave me a scare. She puts her whole hand in her mouth and starts coughing ( a very weak cough) and I thought she was chocking on something. She scared me really bad and on top of that it was dark and I couldn't see her color. But she was okay and she enjoyed roasting marshmellows and she got to play putt-putt. We had a great time!!

Date:: July 04, 2006

Today

Happy 4th of July to everyone!!! Brianna has had a good day. We spent the day at Aunt Sashie's (Sherrie) house swimming. Then we came home and took a nap, (I did, she didn't, she is still going!)So now we are waiting for it to get dark so we can go see the fireworks, she is excited about that!! Hope everyone had a good and safe holiday!!

Date:: June 14, 2006

Today

Can U believe it?? My computer works!!!!!!! I have changed services and it's working great now. I'm so glad of that. Brianna is doing very well. We had bad news last week, she has started a slight curve in her spine. We have an app. to see the DR. in AUGUST I just hope it doesn't progress a whole lot during that wait. but Brianna is happy as always. She wakes every morning and says "Good Morning Mommy, can we get up now?" She is so precious. She is always smiling.

Date:: May 28, 2006

Today

Still having problems with my computer!!So please bare with me while I figure out what I need to do to get this thing working right and I know it is about to drive me CRAZY!!!! Brianna is doing well. Brandon is out of school for the summer, so I hope they will enjoy their brother/sister time together. I will post again soon, I hope by then I will know whats going on with my computer.

Date:: May 14, 2006

Today

Brianna had a great 3rd Birthday!! We had a Dora B~Day party for her. She gots lots of toys and clothes. I think we have started her Barbie collection now.LOL She got a cabbage patch doll, barbie bag to put her barbies in, she got a sandbox,books, coloring books, potatoe head, hairbows,bubbles,toys for the sandbox,and lots of pretty girlly clothes! We had a great day. Thank you all that came and made my baby girls day special!

Date:: May 13, 2006

Today

HAPPY 3RD B~DAY BRIANNA!! Brianna had a great day today. We had a Dora party for her this year. She got lots of toys and clothes. I think we have started her collection of Barbies! Brianna got a sandbox with blue sand(how neat huh)she got Barbies,books,potatoe head,Barbie backpack,sandbox toys,cabbage patch baby,lots of cute outfits. We'll be playing dress up tomorrow! LOL. Thats all I can think of right now! Thank you all that was here and helped make this a special day for my baby girl! I'll try to get pictures posted soon! HAPPY BIRTHDAY ANGEL! I LOVE YOU!!

Date:: May 08, 2006

Today

Hi!Sorry I haven't got to write lately, but our computer is on the broken side right now, so we are useing a friends computer until it gets fixed. Brianna is doing good, she goes for her 2nd visit at aquatic therapy this week. She loves it!! She is excited about her B~Day. We can't wait. We are having a party for her on Saturday. Please come back and find out what great gifts she gets! I will try to get that on here as soon as I can, I hope the computer gets fixed soon. Thank You all that visits her site and sign her guestbook!

Date:: May 02, 2006

Today

Brianna finally got to go outside and play today, she hasn't been able to because it has been cool and rainy for about a week now. She was excited to go out. Jennifer, her early interventions caseworker came today for her last visit with Brianna since she will be the BIG 3 in 11 days. She brought Brianna a Dora B~Day pressnt. We will miss Jennifer!!! Brianna is ready for her B~DAY, everything on TV is "I want that for my birthday" and I mean EVERYTHING!!

Date:: April 23, 2006

Today

Brianna had a pulmonary appt. on Thursday. Things went great. Her Co2 was normal and her pulseOx reading was 100%!!!! That was really great news. It rained all day yesterday so we stayed inside for most of the day and then we went shopping and out to eat with Maw~Maw. Today we gotta plant the flowers I bought 4 days ago before they die, then later we are gonna go out to eat again.

Date:: April 16, 2006

Today

Brianna has had a big day. The Easter bunny got her and Brandon 2 baby bunnies. They named them Oreo and Simple. They are sooo cute. We spent the day with both sides of the family here at our home today. We got to hide easter eggs and eat lots of great food. We are stuffed! Travis (their cousin) is spending the night with us tonight. Thank you Lord for this beautiful day that you gave us with our family. Hope everyone had a happy Easter!

Date:: April 15, 2006

Today

Brianna had a great time at Carowinds yesterday. She got to see Scooby~Doo, Spongebob,and Chucky from Rugrats. We was hopeing to see Dora but she wasn't there. Brianna got to ride the Dora ballons (which I was scared on)But she loved it.She rode the horses, trains, boats, she got to drive her daddy around in a car. She had lots of fun!!!! I'll get some pictures posted soon!!!

Date:: April 13, 2006

Today

Brianna has had a great day. Her 4 boy cousins plus her brother are all out of school for spring break so they all came over today and they played outside. They played guns, basketball, playstation, and all the things little boys do. the weather is great. We are going to Carowinds tomorrow. Can't wait!!!! This will be the first time Brianna gets to go out somewhere in her chair. I hope she has lots of fun!!!!

Date:: April 09, 2006

Today

We had a B~Day party for Aunt Sherrie today. So Brianna enjoyed playing with her cousins Mikayla and Seth.She is tired now so it's bath time and off to bed. We are going to see the Easter Bunny tomorrow. Brianna says she can't sit on his lap cause she wil break his legs. LOL I think she will be scared. I will be sure to let you know how things go!

Date:: April 05, 2006

Today

Brianna had PT taday and she just finished up with speech. SO she is tired but still chasing Brandon around in her chair. It's too windy for her to go outside. She just went into my room and turned on the moosic as she calls it and came in here and told me she is dancing. LOL.She is so precious. We now have to get ready for Brandons baseball practice.

Date:: April 03, 2006

Today

Brianna has had a great weekend. She has enjoyed the nice weather that we have had. She got to play all day outside yesterday. She got to swing, chase Brandon on his 4 wheeler in her chair and she laid out in the sun with moma and aunt Sashi (Sherri)We had a great day!! Brandon was sick on Saturday. Throwing up! We hope he just got to hot at his games and that it is not anthing that Brianna will get. But he was feeling a lot better yesterday.

Date:: March 30, 2006

Today

Brianna has enjoyed the nice weather that we have had today. Her and Brandon played outside while I cleaned out the van. Then we went over to Sherri's and cooked steak on the grill. She had lots of fun playing with her cousins Tyler and Jeff and of course her brother Brandon.

Date:: March 29, 2006

Today

We haven't done much today. Brandon had an early dismissal day so he got home around 11:30. Brianna loves to have him around. She just lights up when she sees him. We have been working on Brandon's animal report, it's finally done so now we have to do a project to go with it. We were suppose to have speech today but I guess Joy is still sick. So maybe next week she'll be better.

Date:: March 28, 2006

Today

Brianna is on her way to bed. She is still watching American Idol right now. She is so funny she sings to the top of her lungs while it is on. She has PT taday which is usually on Mondays but I had a Dr.'s appt. so we had to reschedule. Her and Brandon have been fighting today, cause she was in his room. Since she got her chair, he now knows what it feels like to have a walking two year old sister. I think it's funny. Thank you everyone for visiting Brianna's site and for signing her guestbook. Please come back

Date:: March 26, 2006

Today

This is our first journal entry. We would like to give a BIG thank you to Laura and MJ for all the hard work that they have put into Brianna's site cause without them it would have not been done cause I have no clue on how to do so. So thanks so much!!! So with this journal I would like to keep everyone updated on how our precious baby girl is doing and all the great things she is learning. So please come back and visit often.