Jessica Lee's Page

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Jessica Lee's Story

Jessica was born July the 23rd 2008. She was a beautiful baby and very healthy. She has the biggest blue eyes and a beautiful smile. She started crawling when she was 10 months old and was eating snacks like cheerios, puffs. She got choked a lot in her first year, and had a lot of ear infections. She was on a nebulizer for breathing treatments. She was diagnosed with hypotonia in her hips before she turned one. She was seeing a OT to help strengthen her muscles. She was talking and saying words like bye-bye, ball, puppy, da-da, my paw-paw. Her first birthday she wasn't even trying to open her presents. We didn't really think much about it. By the time she was 14 months she started getting choked on her baby foods (stage two) and would always get sick after eating. So we moved her back down to stage one.

By 16 months she had stopped talking and crawling. After we noticed this we started asking questions and taking her to the Dr's for apt's. We was told that she may have Autism so we went and had her checked out. They was half way through the test and stopped and looked at us.. Asked us if she had been checked out for all her medical and health. Which we didn't know what she was talking about because she was caught up on all her shots and check-ups. So we decided to see if we could get her into Shriner's to get her checked out for Autism and they turned us down, said it was all Neurological, So we went further and made an appointment with her Dr to get her in Children's hospital in Dallas. They did blood work and tests on her. This took along time for us to get the results. We was on our way home from Dallas from one of her apt's and I got a call. It was the Neurologist. He told us that day Nov the 15Th that our granddaughter had Rett Syndrome!! We was floored. I bawled my eyes out all the way home, but at that moment we loved her even so much more. We still don't know for sure what mutation she is but we hope to find out next time we go to Dallas. On March the 19Th she started having seizures. We rushed her to the ER and the next day they started getting worse. They decided to take her to Dallas and she was there for a week trying to get the medication right for her weight. She was put on Keppra, and that worked until the day before we left the hospital and she started having them again, so they added a second medicine which was Topamax. It worked. She has been seizure free since March the 28Th. 2011.

Today she is still not talking, walking, and she still gets choked on regular foods. She eats Baby foods still and pureed foods through the blender. She holds her breath a lot. She wakes up sometimes with the tremors and doesn't know where she is at. Like she is scared. She has trouble going to the bathroom and is supposed to be seeing a gastrologist soon. I have to hold her legs up to help her go to the bathroom. She keeps her hands in her mouth pretty much 24/7 but now she has arm braces on. She was labeled not hearing well and was wearing a hearing aid, then she had to have ear tubes put in. And now she is hearing but not sure where the sounds are coming from. She will turn and look at you most of the time you say something to her but somethings she doesn't acknowledge it. She will start school for the learning next month in August on the 22nd. She doesn't really have the small head but her feet look small. We love our little Sweet-pea and will always be here for her, and she will know that we love her so much!!!