Dreams do come true

One of my Mammys biggest dreams was to have me sit up on my own. In the past I have been able to do it for a minute or 2 but today was the best. For 15 yes 15 minutes I sat up all on my own and it was at the beach sitting in the sand right by the water. So everyone out there don't give up on your dreams because they can come true

Blood work

Being that I have a very serious seizure disorder I have to have bloodwork done to check to make sure that everything is ok with all the meds I take. Well the results are in and everything is normal. I have an enzyme that has always been low even that is increased so thats good.
Everyone is still unsure about why I am able to sweat now. Its good that I am able but for almost 5 years I never did. I am a mystery that the doctors cannot figure out.

Something strange

I don't know if I told you all but I have been diagnosed with a movement disorder. So I started to take a medication to help with the side effects of the disorder. Now the strangest thing is I don't have any of the side effects listed for the medication which is good because the medication is working. What is strange is since I started taking Artane is now I am able to sweat. I haven't been able to do that for years.
I don't know if I like being able to sweat but Mammy is over the moon or so she says.

Sunday

Today Mammy painted our room. Maura was telling me to look at the walls she forgets I don't see, I am legally blind. I don't see the lights like I used to anymore.
I might not be able to see the new paint on the walls but I can smell it. It was cool Mammy pushed me around the room in my bed while she was painting.
My ear is feeling better today. Mammy said she will have to call the doctor to get ear drops as there is guck coming out of my right ear. Since the stuff started coming out I feel better.

Introducing my over seas friends

My Mammy has added my friends from overseas on my blog if you can take a few minutes and check them out.

Please check out Lilys foundation on my list and grab a box of hankies and watch the video.

Thanks
Finny

Some pictures of me

My brother and sister with me

Me in my wheelchair

This was taken about 2 hours before I had my first grand mal seizure

Second cataract surgery

First cataract surgery

I used to eat food and sweet potato was my favourite

Playing with one of toys

I loved to swing and I still do

My first Halloween

My first pair of glasses I was 3 1/2 mths old when I got them

You can see in this picture that my right eye is smaller than the left

Mammy will post more pictures of me again.

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.