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