Crazy few days

Thursday was my Birthday and I was 6 years old. As Mammy says I have come along way and I am to keep fighting. It snowed for my Birthday and Eoghan and Maurs didn't have to go to school so Mammy took us sledding. So she made us all bundle up and yes she squished me in to the jogger as she said there was no way she was going to be trying to pull my wheelchair over the piles of snow at the corners. It was very busy on the hill as all the schools were closed so I didn't get to go on the sled. I was not a happy camper about that. Mammy did take some pictures so she might put them up later.

Friday morning I threw up in my sleep and Mammy said I made a big mess but I was fine. Later on in the afternoon I was having some seizures and then my heart rate went crazy. Of course they gave me some yucky meds to stop them but it didn't work so they had to give me an "up the butt" and that helped. Saturday morning I was very sleepy well so would you be if you got all the meds I got. So Nanny took Eoghan and Maurs to Irish classes and I got to hang out with Mammy. Wouldn't you know the same thing happened I threw up and started having the seizures and my poor chest hurt with the way my heart was beating. Mammy didn't play any games and gave me the good stuff to stop those puppies. yup it was an "up the butt" but at least it stopped them. I go on Monday to see my doctor so we will have to wait and see what she is going to do with my meds

Me in my "man chair"

Relaxing in my "man chair"
Its really comfy

Yup I suck my thumb
See I was so relaxed I fell asleep holding on to my piggies
Awww cute

I got my "man" chair

For Christmas my prezzie from Santy was a "man" chair ( a recliner). Since he wasn't able to get it to me for Christmas I had to wait. So it was delivered the other day and now I am relaxing in style. Mammy has set me up nice in the living room with all of my gear around me. You know the best of my new "man" chair is its nice and soft and squishy comfy. Everyone is happy now I am not hogging the sofa. Will have Mammy post some pictures of me in my new chair.

Saoirse Heffernan gets her Angel Wings

One of my overseas friends Saoirse Heffernan got her Angel Wings on Jan 18th 2011. Saoirse had Battens Disease. She was only 5 years old.

Her brother Liam also has Battens Disease and he will hopefully be starting clinical trials in New York later this year with the hopes that it will slow down the progression of the disease.

To find out more about Battens Disease you can go to www.beeforbattens.org .

Still having a lot of little seizures

Mammy is keeping an eye on them and she is hoping it's because of my ear that my seizures have increased. She hates when they increase my meds all she says "he is taking enough it would knock a horse". I am on a lot of meds and we all know I will never be totally seizure free but we sure can hope.

Under the weather again

I love the winter time as I like the cold but it seems the cold doesn't like me. Yup I am under the weather again. This time its a ruptured ear drum. I am having a lot of seizures little ones. So I am back on oxygen Mammy said if I don't stop pulling the thing out of my nose she will glue it on. But you know she won't do that to me. I seem to have my days and nights mixed up again. All I know is I get to spend time with Mammy all to myself. She is a bit cranky cause I don't go to sleep until the wee hours of the morning and she has to get up to look after Eoghan and Maura and I get to sleep in. I am getting to listen to a lot of music which I love and Mammy got this cool thing called a Nook for Christmas and it can read books to me. Mammy said she might take me to a concert in the city later on in the year just Mammy, Nanny and me. That will be nice.

I have a few surgeries coming up this year but as Mammy says I will weather through them. My birthday is coming up soon and I will also be getting my new big boy recliner hopefully on Wednesday. Mammy has to rearrange the living room she is making me my own space will all of my equipment around me. Hopefully she will take pictures of my new space in the living room

Trip to the Gardens after Christmas for the Train show

Maura, me and Eoghan
Some pictures of the buildings and the trains


Wow I look scared
Go Thomas Go

Mammy said the trains were fast little buggers

Choo choo


All bundled up

Mammy said these were pretty

My wheelchair couldn't handle all the snow by the butterfly

My big brother Eoghan
My sister Maura

Mammy has been slacking again but here are some pictures

Christmas Eve in the Gardens
Me and the Ginger bread family
Aren't we cute
Me and the Caterpiller Eoghan and Maurs in the background
See I took off my glasses to check it out
My big brother Eoghan
Another caterpiller
The 3 of us and the Ginger Bread house
Me and Eoghan
Looks like the butterfly is going to take Maura away
Eoghan, Maura and me
Eoghan
Maura
Christmas picture
Mammy likes this one of us
Christmas morning and all the prezzies under the tree
Eoghan and Maura opening up their prezzies
I got cool Addidas trainers
Daddy helping me open my prezzies
I got a drum
This is hard work
All done I can relax
At Nanny's opening prezzies on the recliner
Yup thats all mine
Getting help
Checking out my style
Dec 27 2010 snow and sledding on the street Bronx style
Hey I even get a turn
Oh no I am tipping over
Me and Eoghan see my cool wellies
Mammy likes this one
Hey not fair I cannot throw snowballs