My story

I was born at 39 week and weighed 6lbs 12 oz. While I was in my Mammies tummy I had a stroke that blocked the flow of fluid out of one of my ventricles in my brain. They thought I would need surgery right after I was born to put in a shunt but I didn't. I did all the normal baby things in the hospital so they let me home when I was 2 days old. Mammy had a long list of things to watch out for and a whole load of appointments to take me to. Before I left the hospital I had an MRI done and when we got the results it showed I had PVL which means I had some dead tissue around the ventricle (brain damage).
The eye doc said I had cataracts and I would need surgery but they weren't ready to be removed. My head was also on the small side and I had to go to the ped's weekly to make sure I was growing. I got enrolled in Early Intervention and I had therapists coming to my house. Things were going along great I was getting big and Mammy decided to start me on formula I got very colicky. She discovered that soy formula got rid of the colic so thats what I drank. I was a bit of a spit up baby but I was growing so it was fine.
I had my first cataract surgery in June and everything was great. I was getting very jumpy and everyone wondered if I was having seizures. I had my second cataract surgery the 1st of September and on the 5th of September I had 2 grand mal seizures and ended up in hospital for a few days. I got to come home on yucky medicine. I was back in the hospital again in October with seizures and came home on an increased dose of yucky meds. In November they discovered that I was having Infantile Spasm seizures and I got a new medication but it had to come from Canada. I started taking the new med and I started to smile again. I was having alot of ear infections and asthma. I got ear tube put in and the infections stopped. They discovered I was aspirating and that was what was causing the asthma symptoms. I had to have my feeds thickened to stop that. I was still having seizures but they were different to the IS seizures so they added more meds to try to stop them. They all worked for a while but they would start back again. I got a g-tube put in and Mammy was able to feed me and I started to put weight on again. Then they decided to try the Keto Diet. With in 3 days of starting the diet my head drop seizures stopped. That was great as I was able to stop wearing the big blue helmet. My Mammy had read on a report form the hospital that said I had LGS. LGS is lennox-Gastaut syndrome it is a hard to treat form of epilepsy.
I have had a few more surgeries and alot of hospital stays. The scariest one was when I was 3 1/2 years old when I ended up on a ventilator due to seizures which caused aspiration pneumonia. They were surprised that I left the hospital with out have a trach put in. Hey the doctors don't know me I am a fighter.
I am now 5 1/2 years old I don't walk, talk, sit up and the seizures and the stroke has also robbed me of my sight and I am classified legally blind. I have a big brother and sister who love me for who I am. Yeah I might get more attention because of my medical condition but Mammy is pretty tough on me and makes me do things I don't want to. She keeps telling me its for my own good may be she is right but I still don't like to stand. My genetic doctor says everything I have is just a symptom of an underlying condition but they still haven't found what I really have well I don't have a name for my condition but you know putting a name on what is wrong with me won't change me. I am who I am Finnian.