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Tuesday, October 4, 2011
Jessica was born on July the 23rd of 2008. She is always full of joy, laughs and full of giggles. She had a pretty rough time just in her first year of life, with ear infections and choking a lot. She was a late crawler and loved to make us laugh. Before she turned one, she was diagnosed with hypotonia in her hips. This caused her to have trouble going to the bath room and we would hold her legs up to help her go. We got an OT to come in and start working with her on walking and using her muscles. She would crawl everywhere and pull herself up to things but would never walk.
She loved to eat cheerios and crackers and she was eating really good. She was feeding herself and holding her own bottle and playing with toys and was a very happy baby. She would even sit on the floor and roll the ball back and forth to her paw-paw. She was saying words like puppy, ball, bye bye, my paw-paw, until she turned about 14 months. She started choking and gagging on everything we gave her, she even lost the ability to hold her own bottle and stopped picking up toys, and stopped feeding herself. We put her back on Baby food for it was the only thing she could keep down. She couldn't even handle the stage three baby food without choking, or it coming back up.
When she was about 18 months, and she never walked, and she was still choking on everything we got worried and started taking her to Dr's to find out what was wrong. We tried to get her into shriner's to be tested for Autism, for that is what the Dr's said she could possibly have. But Shriner's turned us down and said that it sounded like it was Neurological. So we went further and went to her Dr and requested that we take her to Children's hospital in Dallas. They where really good with her and did some blood work, they thought that she had Autism as well. All this was in a time period of about 10 months before we got the results back from her Neurologist that she had Rett Syndrome. This was so heart breaking for us to find this out but we didn't really know what all this was about. We just know that she has brought us so much joy into our lives and didn't understand how this could happen to her. We loved her that much more.
March of 2011 she started having seizures, and she was in children's hospital for a week to try and get her medicine regulated. She was put on Keppra for almost the whole week and she was still having the seizures. They decided to put her on a second medicine which was Topamax and she had one seizure after that and then the seizures stopped. But then she lost her appetite and was not eating anything at all, and her weight was dropping. The Dr's was talking feeding tube and we really didn't want to have to see her go through this. So we got to asking around and talked to the Dr about it. We asked them about putting her on Cyproheptadine and she did great, Jessica started eating again and she started putting her weight back on. As of today she is still eating baby food and pureed foods, and still on the bottle. She is about 40lbs and still seizure free. She is doing good and always happy. She was also found that when she was in the hospital that she has two bacterial infections on the back of her throat, which is Acinetobactor baumannii (resistant to ceftriaxone only) and Staphylococcus aureus. So we have to keep a close eye on her if she gets a fever or starts aspirating that it could set these off. She still is not walking or talking, she is in a wheel chair and still chokes. She is seeing an OT and is now in school. She keeps her hands in her mouth so we have to keep arm bands on her arms. She is still waiting on a swallow study to be done. We still don't know what her mutation number is but will hope to find out soon.
Jessica is a very loving person and loves to laugh and enjoys watching cartoons. She loves music. I will post more updates as soon as I can.