Birthday April 24th 2006
I had a very healthy pregnancy with kate. She was a full term baby. When I was about 6 months pregnant with Kate during a ultra sound they saw something and wanted a second opinion. So I went to University of Virgina to get another ultra sound. The Dr that viewed the ultra sound said that everything looked fine. So we went on our merry ole way and didn't worry anymore. Kate was born April 24th 2006 by induced labor. She was a healthy 8.9 baby girl. She was beautiful. Her one eye had some liquid gunk in it and the Dr's perscribed me some ointment to put in the corner of her eye and told me that it would be fine and no worries.
Everything was perfect. She was a happy little baby girl she started trying to hold her bottle rolling over and had vey good upper body strengh. My husband and older daughter Sarah went away to the beach for the weekend while my Mom and Dad kept her. That is when Kate started doing weird facial expressions on one side of her face and the same side that she had that her arm and leg would move up and down while the other side of her body was calm. She did it several of times. When I got home she did it again. I had never saw anything like it and rushed her to the ER. Once we got to the ER they did a head scan where they discovered what looked like a tumor. All that my husband and I could do was hold each other and cry thinking the worse was it or could it be Brain Cancer. They omited her to the hopital and started running more test. They hooked her up to a 24 hour EKG and did a MRI. I sat in the hospital for at least 2 to 3 days not knowing what was wrong with my baby. They did one last test the optomolgist came in lookd at her eyes and report that she has lucane on one eye. They described it was like cheese with holes in it. I asked if she would ever be able to see and he said she hopefuly would but wasn't for sure. The next day we had a meeting with the nerologist to discuss Katelyn and that is when he said the worst words I ever heard in my life that she had Aicardi Syndrome. My husband and I busted out in tears once the Dr told us of Kate's future. He said that she had partical agenes of the corpus. We immediatley got onto support groups to learn more and vist this web site here as well.Her MRI was viewed and showed that she had 2 cyst on the back of her brain which caused her to have a hard time to use her vision to her fullest. Over time her cyst have disappeared and she has better vision abilities.
Kate 1st got placed on Phenobarb which is the most aweful medications ever invented. It made her sleep her days away. That smile she once gave us daily was gone. She had at least 4 to 5 infantile seizures a day. She gave us quite a scare by holding her breath that we had to call the ambulance on one hot summer day. She was in and out of the hospital for at least a year. We placed her on ACTH which is a injection that she had to have daily. It blew her up and broke out her forehead badly. She had in home therapist that came to our house to work PT,occupational therpay and a vision therapist. She did this until she turned 2 and went to a school.
She goes to the greatest Pre school with the best teachers and therapist she could ever ask for. They have her busy doing therpay and doing art work. She has been in the same schooland class room for 3 years now with the same exact set of teachers which she adores.
Kate is now 4 1/2 she will be turning 5 this month on the 24th. She has come along way. She is on alot of differnt medications right now.
She is taking Keppra,Topamax,clozerapate,limictal. She takes these meds twice a day. She is way over medicated. So she is taking 27 pills a day along with her liquid keppra. We have a appointment with her nero a day after her birthday so hopefully we can look at one mdication that will give her the same benefits as taking 2 pills a day. Most days at scool she wants to sleep. On most days the therapist can get her to work where other days she wants to sleep. After she has a spasm she will sometimes immediatley go to sleep. kate is a very happy funny little girl who enjoys the life and her big Sister and her little brother. She also is going to a differnt therapist on Fridays and is doing pretty good stregth wise. We are still working on her trying to stand and walk. She will do it when she is good and ready to. She has a stander and a grait trainer that she uses. She spends most of her days sititng up playing or being laid back or sleeping. She still is having infantile spasms and we are lucky taht they haven't gotten any worse. A optometrist once told me that Kate may not ever anything but light.She has luckly proved him wrong. She will reach for her cup when it is out of reach and loves playing with her musical light up toys.