|
My Story and how it all began
Conner was born March 30, 2000. He was a healthy baby boy that we had waited so long for. He was able to sit on his own and get on all fours, he played normally, and we never had a clue at that point what was in store for our little boy. At 11 months we asked his doctor why he was unable to get anywhere when he would attempt to crawl, he then scheduled a PT evaluation for him, and he was placed in therapy. We wanted to know what was wrong though and made our first trip to the neurologist. He gave us a diagnosis of CP around 14 months, but with continued decline of his muscle tone, over the next few months, his doctors searched for another cause. We took Conner to a pediatric eye doctor in October of 2001 and he found the cherry red spots in the back of his eyes,with more blood tests ordered right away, we received the news the day after Thanksgiving 2001. Conner has Sandhoff disease, but was showing "A Typical" progression, meaning that his progression through this disease has been a little slower than average. His seizures started in mid April 2002 right after his 2nd birthday, these were the "stop breathing" type. The first time it happened he turned blue and just seemed to stop "everything". It took about a month for his doctor to accept that these were indeed seizures, he thought he was going into respiratory failure, and gave us all of the at home monitoring devices, the seizures started to change though and we could see twitching starting in his mouth area before the alarms would go off. Finally a 48 hour EEG was ordered and not to my surprise but the doctors, Conner was having around 17 seizure type episodes a day. He was placed on seizure medication called Trileptal and it has controlled them for the most part. A second medication was added in early December, which was Topamax. As I write this it is the day before Christmas eve, and Conner is 3 months away from turning 3. Conner at this point is happy and is in good health, he still babbles and laughs occasionally, his vision we believe comes and goes, his hearing is still good. He eats and drinks by mouth with meals modified, thick-it added to liquids and all foods are blended down to a pudding type consistancy. We have him on natural medicines which are one thing that we know for sure has slowed his progression. We thank God for every additional day we have with him.
|
|
|
