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Our
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Merry Christmas & Happy New Year to everyone. Courtney and her family have been doing very well the past few months. We're struggling with Medicaid to get part of her new chair approved but I have faith that it'll all work out. At her last visit with Dr. I she grew several inches but lost a few pounds as well. Her leg contractures are tight but she is working everyday to losen them up. Coutney is involved in UIL competitions with school and enjoys every minute of competing. She will be 10 this year, feels like she's going on 25 and evolving into a beautiful pre-teen! Courtney has been pretty sick these past few weeks. The first go around the docs said she had the flu. Just when we thought she was over that and headed back to school she was sick again. She was admitted to the local hospital on a Wednesday for severe dehydration and was diagnosed on Friday with the Rotavirus. She went home the next day. Dehydration usually gets the best of her. Thank you all for the prayers and well wishes for her and the family.
Rhea Courtney has been doing very well and is enjoying her time off for the summer. Courtney leaves on Sunday for MDA camp and is very excited. On July 12 her and I leave for the Families of SMA conference in San Diego and while we're there we are to the zoo. Be sure to check back for an update on her story and for pictures. Thank you to those of you who have been so kind and wonderful to help Courtney and I go to San Diego. Love always, Aunt Rhea Well, it's official - Courtney and I are going to the Families of SMA conference in San Diego!!! Courtney's great grandmother has made this possible and we are so thankful. My grandmother has never met Courtney but as she says, she and my grandfather have always held her close to their heart. We are so looking forward to going to the zoo and having a wonderful at all of the events during the conference. Courtney is doing very well. She now weighs 35 pounds!!! For so many years I never thought we'd reach 30 and now we're pushing 40! That's about all for now. Love Aunt Rhea It's been a while since anyone has posted but everyone has been really busy lately. The most recent thing going on right now is that I am planning on taking Courtney to the Families of SMA annual conference in San Diego in July. We are looking for sponsors to help us finance the trip. If anyone knows of someone that would like to help Courtney experience a trip of a lifetime to San Diego to be surrounded by other children just like her for 3 days, please contact me. I plan on sending out formal requests so let me know if you'd like to be on the list. My e-mail address is rac0045@unt.edu. This conference is an opportunity for Courtney to be with kids that aren't constantly reminding her of her daily struggle. I took her back in 2002 to Chicago and she
still talks about the great time she had. Courtney is doing very well, she's healthy and still loving school. Labor Day was a blast! Courtney was featured on our local news here in Dallas for her first trip to MDA camp. Mike Snyder, the local broadcaster, went to the MDA camp to follow her around and document her day. The 5 minute clip was shown on all the trailers for the Telethon the week before and then on Labor Day it was shown about 3 times. Mike Snyder also interviewed several other SMA kids and everyone was wonderful. When Courtney was interviewed she told Mike Snyder that SHE wanted to hold the microphone for the interview. She said her favorite thing at MDA camp was climbing the wall and then going down the zip line. Mike Snyder asked her how she felt going down the zip line and she said, "I felt free." She said that she wanted to live at camp and wanted to go back that day. Courtney's mom, dad, brother and myself were all on with her. There were about 8 other SMA kids featured that day as well. Trey and his dad and Darrel Allen Jr. and his family were there and Courtney really enjoyed seeing them. MDA camp was a wonderful experience for Courtney and I can't wait for her to go again next summer. Love, Aunt Rhea Last Friday Courtney saw Dr. Baker, her urologist, to see if her kidney / bladder reflux had come back. Courtney is having a difficult time holding her urge to pee until she can get to the potty. The test concluded that her reflux is NOT back, her bladder does not hold as much urine as other children her age, and her muscles are getting weaker thus making it difficult for her to contract them. She did wonderful during the exam, which was uncomfortable, and shouldn't have to see Dr. Baker again unless she begins getting UTI's. Her & Jennifer have been going to the weekly MDA fundraising events here in the metroplex and they are having a wonderful time. At the event today Courtney was the judge. She got to put the people in "jail" so they could raise their bail and get out. She had a great time! School begins in a few weeks and Courtney will be in the 1st grade. -- Aunt Rhea -- today is monday July 24 2005 Courtney went to mda camp this year for the first time and she loved it it was a little scary for her at first being away from mom and all but she did great if was worse for me I think cause I didn't really know what to do with out her here following me all over like she does it was a great expierence for us both well till next time Today is good Friday and Courtney has been with out her power chair for six weeks and she finally got it back today and I can't keep her out of it which is not a bad thing at all it gives my back a break she also got her standing danni and it is awsome she drives it around and loves it that she can stand in it cause she found out that she can reach thing that she couldn't before. Courtney I love you . Mom............. Things have been growing pretty well with Courtney. The biggest thing lately is that she cut her hair. She let it get pretty long and then decided to cut it. She has a friend in school that she adores and of course she had to have hair just like her! I think it's cut itno a "bob" but I have not seen it yet. I hope to have her website updated soon so be sure to check back. Aunt Rhea Courtney celebrated her 6th birthday party this past Sunday. She had a "Cinderella Party!" She was Cinderella and other girls dressed up as other princesses. All of her family was there and she had a wonderful time. Her biggest surprise was that Amanda was in town for her birthday. Courtney hasn't seen Amanda since she was the flowergirl for her wedding. She also received a very special bracelet from her daddy that said "princess." Of course I had to remind everyone that if there was a princess than there had to be a queen, so I happily took the role! Pictures will be up soon so be sure to check back! I love you Honey Bunny! Aunt Rhea. Just a quick update: Courtney saw Dr. I this week and was told that she's looking wonderful. She weighed in at 30 whole pounds! She also saw the dentist and her teeth are sparking white with no cavities! Courtney is really enjoying the summer, going to the lake quite a bit and playing all day and night with her little girl friends. Courtney's been battling an upper respiratory infection for a few weeks but seems to be doing much better. Her meds have been changed twice and her pulmonologist ordered her a cough vest which has aided in her healing quite a bit. I saw her yesterday, and although she looked extremely pale she's feeling pretty well (that rhymes!). She's been out of school for 2 weeks and hopefully will return back on Monday, just in time for her Valentine's Day party!
Honey Bunny, I Love You! You are beautiful!
I hope you feel better soon!
Aunt Rhea I just wanted to take a quick minute to say thank you for your prayers for Courtney. She got over her 2nd bout of the flu rather quickly. It spread rapidly through her home as well. Thank GOD she hasn't relapsed for a 3rd time. Her story will be updated after Christmas so be sure to check back soon.
Love,
Rhea Hi everyone. I just wanted to let you know that wedding pictures are being posted so be sure to check back every few days. Also be sure to look back at Courtney's story - it should be current within a few days also! Have a great week.
Rhea Well, the big wedding weekend is over. Courtney was absolutely beautiful. There probably wasn't a dry eye at the wedding when Courtney was pulled down in her beautiful wagon. She smiled all day and stole the show! The bride was very honored to have Courtney there on the happiest day of her life. The ring bearer was absolutely wonderful with Courtney. He didn't leave her side all night! Pictures will be up soon and there are tons of them! I'll be updating her story soon with all of the details as well.
Aunt Rhea Hi everyone! I just wanted to post and let everyone know what's been going on with Courtney lately. She is in school going 1/2 days and loves it. She will continue to go 1/2 days for a while. I even think she has a few boyfriends too! Unfortunately, on Wednesday Courtney had to take a quick visit to the ER. She had a fever that would not break and her ears and throat were hurting. Both of her ears are extremely infected and she has what seems to be an upper respiratory infection. Luckilly, the infection in her chest has not moved into her lungs. She has received 2 shots of anti-biotics and seems to be improving very quickly. Thank God! Other than her being a little under the weather, things are going great. Recent pictures from her 5th birthday party will be up soon along with pictures from the wedding that she'll be a part of in 2 weeks! Thanks for all the postings and support!
Courtney, I love you Honey Bunny!
Aunt Rhea wooooohooooo I can't believe i'm five now I feel so much older and my little body still looks like I am threee hehehehe may be that will work out for me when I get older well mommy is taking me to a heated pool so I can swim and get my legs some excercise that's all for today I am so ready to go to school I gotta get all my school stuff and I got my power chair hey all guess what I did today I took my mickey button out that feeds me but I have not used it in 2 years so I thought that it was time to come out and now I can do things like my friend ashley and not worry about my belly hurting or hiting my tube because its gone now and healing up. I was so brave and pulled it out all by my self very gently
now I can swing around my friends moms back so it won't hurt now and I don't have to worry about swiming or nothing .this all in courtney's words by the way so if it don't make sense this is a four year old speaking I just type what she says well hi everyone, today is friday, and I am just playing with my cousin cheyanne she is staying with us for the weekend cause her mommy is having surgery and she is really wearing my mommy out well that's all for now, oh and incase any body is wondering I am well and healthy and ready to start school. hello all just wanted to say I went swimming yesterday and had a great time I dunked my head under water and walked around in the little pool it was just my size thanks mom and bubba for the great time I would like to thank you all for taking the time to read about Courtney and the life that she lives. I would also like to thank Laura Stants for creating a wonderful place for everyone to meet Courtney and the family.
Rhea
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