Hotel CHONY

I checked in to Hotel CHONY on Tuesday afternoon and got hooked up for my VEEG so they can see my seizures. Here I am with my new hair do

So nothing really exciting happened on Tuesday night other than my usual seizures that I have when I am asleep so not much change there. 

Then on Wednesday morning my Doctor came in and said that they might keep me an extra day or so in hopes that I would have the new "episode" on VEEG.

Hello from Hotel CHONY day 2

Didn't really like my new hair do so I decided to pull at it hehehe

and I pulled

and then I guess my hand slipped and it got me on my mouth

not to worry it didn't hurt and Mammy fixed it back again.

So Daddy is on duty with me this evening and tonight and Mammy said to watch me as I was kinda acting a bit funny. Guess what I had the puking episode and they got it all on tape. So they think it is a seizure but we will know for sure tomorrow when they have gone through everything. The best thing was I had 2 of the episodes. So until tomorrow Sín é

Oh Daddy!!!!

Happy Easter everyone!!!! We went to Auntie Dee and Rick's house for Easter. When we got there Daddy pushed me up the driveway. Hehehe that was fun.

I got to hang out on the back deck in the sunshine and yes they put Bunny ears on me

This is a picture that Mammy loves and yes she took it

She also took some pictures of Eoghan, Maura and my cousin Aidan

and here are more pictures of them

and here is Nanny with some of them

I have a good cough and Mammy had Daddy take me to the doctors office to get checked out. We were there for a long time waiting to see the doctor. The good news lungs are clear, throat not red, and my ears are fine I just have a cough and at times a runny nose so they said I am fine.
Mammy had to go to the dentist and when she came back she was talking funny. I hope she will be okay tomorrow as we are checking in to Hotel CHONY (Children's Hopsital of New York also known as Columbia Presbyterian Children's Hospital ) for a few days. I am having a VEEG done and that is just fancy talk for a video of me while I am hooked up to a machine to check my brain waves out to see what my seizures are up to.
Sín é

Friday, Friday

We went over to Nanny's house today and on the way I got to see the Park Rangers on horses

When we were at Nanny's we got to see Aunt Mary, Eileen, Aunt Peggy and Uncle Pat. Mammy took this picture of me hanging out at Nanny's.

After we left Nanny's house we went and I got my haircut. I tell you I am a fine looking gasúr now with my new hair cut.

I will be going on my holidays for a few days next week. I will be checking in to Hotel CHONY on Tuesday for a VEEG and they are also supposed to some cardiac workup on me too. The cardiac work up is for the new seizure medication that I am on. So ladies get my crib ready as I will be seeing you all on Tuesday in Tower 6.
After having a great day out and about I ended up having a few seizures and my poor tummy is all upset again. 
Oh well Sín é

THANK YOU, THANK YOU, THANK YOU

WOW!!!!
First of all I want to say a HUGE THANK YOU to all who donated to my "gofundme" for my new jogging stroller. We reached and passed the goal amount in just over a day. Thank you, Thank You, Thank you, Thank you everyone.
Steve-o THANK YOU. Its because of you and your friends I am getting my new jogger.
You know if it wasn't for the Spartan Race having the Special Needs race at Citi Field this would have never happened.
Mammy and Steve-o will have a chat and will figure out where to pay it forward.
THANK YOU THANK YOU THANK YOU EVERYONE
Sín é

Wow

What an amazing weekend I had. It is really unbelievable so many people are moved by the picture of Steve-o and me. So a big Thank You to the photographer for catching that brilliant picture. We also cannot forget to Thank all involved in making the Spartan Special Needs Race possible.
Mammy was talking about getting me a special needs jogging stroller because I am really getting too big for the baby jogger I have. She has gotten very crafty at keeping my long legs away from the front wheel when it is nice out by using the hood and a pillow and when its not nice weather wise the rain cover keeps my long legs away from the front wheel.

 So there is a gofundme page set up to help get my new jogging stroller.  http://www.gofundme.com/8coveo
Steve-o gave Mammy the push to do this for me
Sín é

Never ever say you can't

Mammy asked awhile back if I could compete in a race and that she would help me. Got an answer back saying "Of course I could do the race". So yesterday Saturday the 14th of April was my big race day. I was out at Citi Field to compete in the Special Needs Spartan Race. I was so excited while I waited my turn.

Maurs was also running in the other kids race and she was excited too

Maurs race was before mine and she had to run a mile up and down steps and go through obstacles. It was great as everyone who finished got a tee-shirt and a medal. Maurs was a bit knackered after her race.

Then it was my turn Mammy was running with me and the next thing I was helping to carry The Flag on my wheelchair that was really cool.

. We went around a few of the obstacles and then we had to climb the stairs. I was like a King they carried me up and down the stairs in my wheelchair. Every one got a work out just doing that hehehehe cause my wheelchair is HEAVY. Then Steve-o wanted to know if I could do some of the obstacles that he would help. Guess what? Mammy said sure and they took me out of my wheelchair and I did some of the obstacles with Steve-o.

Then we were going to be going up and down steps again and Mammy parked my wheels and figured that she would carry me. She didn't carry me Steve-o did. I know I look much younger (I am 9 years old) as I am small and skinny but you know when you are carrying me I do get heavy.

See Steve-o I was smiling as I was having fun

Here we are coming along the last stretch of the race and here we are at the finish line me and my HERO Steve-o What an amazing day what a great experience and a HUGE THANK YOU to all that helped me and the other kids. To Steve-o THANK YOU for having such a big heart and THANKS for being my HERO. So everyone never say you can't cause all you need is the heart to want to do something and your HERO's are willing to step in to make it happen Sín é.