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.