I have been sick and alot of Doctors appointments

I came out in a rash and all Mammy thought was I had the measels. Of course everyone said "He cannot have measels he's had all of his shots" Well Mammy made them do the blood tests to make sure and to check out as to what I might have. Well the answer is I had Epstein Barr Virus aka Mono. Now you usually get the rash when you take antibotics but of course I got the rash and I didn't take antibotics.
We went to the neruologist to talk about all the seizures I was having and to see if there is any relation between them and the problems I am having with my oxygen lows and the the way my heart rate goes whacky. They want me to follow up with GI to have the nissen fundo done on my tummy so I won't be able to throw up and also at the same time hopefully have a muscel biopsy done to see if I have Mitochondrial disorder. The pulmo doc said I need to have a sleep study done so they would make the arrangments but I had to follow up cardiology. Went to see the ENT doc and everything is fine with my throat and my ear tubes. So the next big appointment is to see the heart doctor to see whats going on there. I will let you know what happens or I should say Mammy will.

I was on my holidays again

Bonnie and Mammy took me to the ER on Monday cause I wasn't holding my oxygen up. When we got there they had to give me oxygen and then they started with x-rays, blood tests and then they said that I was going to be staying . Got up to my room around *pm and then in the morning they hooked me up to the EEG. There was so many doctors coming in and checking me out. They still haven't figure out why my heart rate goes from way down low to way high and also why my oxygen falls down. Mammy says it must be that the signa; is getting disrtupted but I don't know.

I got to come home on Friday and I will probably need to have surgery on my belly to stop me form throwing up. While I was hooked up to the EEG I had a seizure from the right side of my head and then I threw. I guess I kinda scared some of the doctors but Mammy kept telling them " He has been doing this for a good while" but you know at least they got it on tape.

I ahve alot of appointments coming up in December and Mammy aslo has to call and get me appointments with the ENT and the eye doc as I was in the hospital when I should have gone to see them.

My teacher is coming

My mammy is slacking

Well I spent 11 days in the hospital and they wouldn't tell much to Mammy and she was mad. But of course I was only home 1 day when I had one of the seizures they were looking for. Since then I have been good. I have been having weird things happen with my oxygen levels and my heart rate. Mammy can handle my heart rate going high but when she see low numbers she gets a bit panicy. My low oxygen can be handled with some oxygen so that is easily taken care of.
You know my Mammy stays up all night watching me. She only goes to bed when Daddy's alarm goes off. She gets about 2-3 hours of sleep. She sometimes takes a nap after dinner to catch up on her sleep. She doesn't sleep during the day even though she could caues Bonnie is here with me.
I had fun at Halloween I got dressed up as a doctor and went out trick or treat.
Mammy has alot of doctors appointments set up for me so we will be busy. She is even taking me back to the heart doctor to get me checked out. Even though the last time we were there the said there was nothing wrong with it but she wants to take me again.
Oh well Mammy is the boss

I'm on my holidays

I am in the hospital getting my brain waves checked out. I had 2 thingys the other day and I didn't feel good at all. One I coldn't stop my hand from shaking and Mammy and Bonnnie got very worried because my heart rate went down low. But I came out of that one with a bit of oxygen and some prayers. But later on I had one of my "shouts" but I came out of that one with no help at all.
I think i scared the daylights out of everyone as I am now in the hospital they are trying to get to the bottom of these things.
Yes my Mammy gives me all of my meds so thats not what is causing them.

Yesterday was yucky but today was much better

Yesterday was a yucky day I threw up a few times and I was very sleepy because I was having alot the thoes things Mammy and Bonnie call spells.
Today was much better Ididn't throw up at all and I only had a few of thoes spells.
Mammy and Bonnie had talked to the doctors office and they called back again today and said they are not seizures but why do I throw up if I am eating when I have one. Also how come if I have alot of them together do I get sleepy?
Mammy is frustrated because its like they don't believe her. All Bonnie can say is she see's them too and how they affect me but unless the brain thingy tells them its true they are not seizures.
Dr. H basically said the same thing that Mammy was thinking so Mammy feels a bit better with what Dr. H said. Dr. H is my movement doctor.
I don't want to go to the hospital because my granduncle and grandaunt are here all the way from England so I will try to behave and not have any more spells

Two years ago

Can you believe that 2 years has gone by. I eneded up in the special care ward on a ventilator from aspiration pneumonia from seizures that took alot of medications to stop. My lung collapsed and I couldn't breath very good. My Mammy said it was a scary time as they didn't think I would pull out of it. But I did because I am a fighter.
Here I am a few weeks ago at Orchard Beach in the Bronx with Eoghan my brother and Maura my sister having fun in the sun at the beach. A big difference right?

I am different but I am here and I am still fighting.

There is something going on with me again I am back to puking. I don't like it and neither does Mammy or Bonnie. They think its seizures but all I can say is "it leaves a yucky taste in my mouth"

The Lily Foundation Presentation 2009

faces of mito..

Its Mitochondrial Awareness week and this video shows that we need to find a cure.

Keep an eye out for Hudson one of my buddies he is fighting his battle every day.

The weekend

I got to hang out with Daddy on Sunday we watched football well Daddy did all I did was kick him and squeal when Daddy cheered.
Sunday night was a different story. I started to cough and gag then my legs went straight out and I didn't like it. Mammy came in and tried to make me happy but until my legs stopped sticking out straight she couldn't do alot for me. When that was over I puked and some of it went down the wrong pipe. Mammy took out the sucko and started sticking the tube down my throat and up my nose. I kept shaking my head no but she kept telling me to cough and she would stop that the junk had to come out. I coughed but it didn't all come out and she checks my breathing and then she gives me a breathing treatment once I got that I was able to cough the junk out. You know Mammy stayed up checking me all night.
On Monday I was very sleepy well hey I had a rough night. Bonnie didn't like that I was sleeping so much. Then I wasn't peeing so they were watching me even more. Bonnie woke me up but I didn't feel good I was very tight and both Mammy and Bonnie kept saying my eyes were going everywhere. That finally stopped so they kept telling me I had to pee or else they would have to put another tube into me. I finally did go and I felt much better still a bit sleepy but better.
They said I was having seizures but then again it was raining outside and sometimes I have seizures when it rains.

Everyone is back at school but me

Eoghan and Maura started back at school but I didn't. You see I was supposed to start kindergarten this year but the one choice of a school they gave me my Mammy didn't think it was the right place for me to go. So now Mammy is working on trying to get me into a school that will suit my greatest needs. Well you know I have alot of needs but my biggest needs is therapy 1:1. My Mammy also wants my nurse to go to school with me like she has been. I get seizures that I stop breathing in and if you don't know what they look like and I don't get the right treatment it won't be good.
Keep fighting for me Mammy

Again

I have yucky stuff in my ear again. So Mammy called the doctor and she got some new drops for it. Mammy is happy that I don't whine and cry now when I get yucky ears all that happens is I throw up due to virtigo and I scratch my head and the back of my neck.

I don't know all about it

Because I am 5.5 years old and I haven't had Infantile spasm seizures for awhile they are slowly taking me off one of my meds. I don't know all about it as I have been jumpy,twitchy a bit and today I had a different seizure and I threw up my breakfast on Eoghan's bed and some got on Bonnie my nurse.
Then later on they took me to the pool even after loosing my breakfast. You know I had fun and Mammy took me in the big pool but I got out after about 15 mins as I was cold. So I got to listen to all the noise around me. We got home and everyone was tired But I feel good and had fun swimming with Mammy.

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.