She's been slacking again

Well since the last update I have been a busy little boy. I came of the keto diet for my seizures as I was losing too much weight. So now I am on big kids soy formula that I get through my g-tube. I also had a swallow study done and I passed it so I am able to eat and drink by mouth. We still have to be careful when I have seizures as sometimes I don't swallow right and everything goes down the wrong pipe.

I also got to try something new this summer but not to sure if I really liked it. I got to go surfing with an amazing group of people. I liked being in the water but I swallowed a lot as I didn't remember to close my mouth when the waves hit me. So I am going to practice on not swallowing the water so maybe I can try again next summer.

The summer was quite as Eoghan and Maurs were in a summer camp and it was cool as they had a graduation from camp and it was at Police Headquarters in the city. I was cool as I got to go on the subway and I got to see their graduation.

Eoghan started high school and Maurs is in 6th grade and I am in 4th grade. George is still my teacher and we have fun every morning.

I am not really happy right now with Mammy as she took me to the hospital the other day and now I have blue booties on my feet. Yup I had surgery on my ankles. So hopefully I will be back standing and learning how to take steps soon. I didn't like standing any more and my hip was starting to hurt again so  I had to have the surgery on my ankles.

They had to do a lot of work on my right ankle that is why the cast is bigger on my foot. Oh I forgot to tell you about Halloween this year I was a pirate and I even had my own ship a lot of  people like my ship. I even had a sail, a parrot, a pirate flag the works

Well Thanksgiving is over and I got to stay at home with Mammy as it was Siobhan's turn to cook this year. I was just after having my surgery and so I cannot have my legs hanging down too much or else they will swell so Nanny brought home some dinner for us. The next holiday coming up is Christmas and Santa Claus so I wonder what he will be bringing me this year??????

June

Wow we have been busy. Eoghan my big brother graduated from 8th grade and will be going to high school in September. So we had a party for him at Mike and Siobhan's house. Then we get a call and I was asked to participate in the Confirmation Ceremony which was really cool as I had already made my Confirmation back in December.So Mammy got me all dressed up in my suit, shirt and tie and of course my cowboy boots and I got to wear my red gown and had my Confirmation sash on. Boy was I one cool looking gasúr

At the end of the ceremony I got presented with a special gift and Mammy was speechless. Its the Saint that I took for my Confirmation name and on the back it had my name on it. I have been wearing it since so THANK YOU ALL for my special gift

Finally got my holidays from school but its only for a week and then I start back with the summer program. Because of my disabilities I get what is extended year schooling.
We were supposed to be taking a road trip on Saturday but it doesn't look like it now as Mammy is coughing a lot and her voice sounds funny. She should have gone to the doctor but she always waits until she has no voice. So it doesn't look like we will be going to the Special Needs Spartan Race in Connecticut and Maurs doesn't get to compete in the kids race either. So maybe she might take us to the zoo or the gardens instead.
I might be getting to do something exciting in July so keep your fingers crossed. Yes its something cool and adventurous and it will have people talking but we don't care
Sín é

Well done Mammy and Siobhan

Sunday Mammy and Siobhan went to Tuxedo to do a Spartan Sprint race. They finished the race all thanks to Natasha and Steve. Shhh don't  tell anyone but they were the last two people across the finish line but you know what THEY FINISHED THE RACE. Well done Mammy and Siobhan

Saturday May 31st 2014 Road Trip

On Saturday we took a little road trip up to Tuxedo New York. You see a little while back we went to a Spartan race out at Citi Field both Maura and me took part in the kids race so Maurs wanted to do one where there was mud so off to the race in Tuxedo we went. Here we are at the Spartan kids race starting line

While Maurs is running her race me and Mammy are checking out the obstacles near the kids race and you will never guess who we saw? Steve-o. Steve carried me during my race at Citi Fields and without Steve-o and his friends I wouldn't have my nice new jogging buggy. So it was really nice to see him and to thank him and everyone  for everything they have done for me. Steve wanted to bring me on the course and do a few obstacles I really don't know how he did it but Mammy let me go off and play with the big boys and girls ALL BY MYSELF. Can you believe it????? We took a bit of a detour and headed over to the kids race and Josh Gibney took these cool photos

Then we headed over to the end of the kids race and I got a medal. Thanks Melandie Williamson Alexander for taking some pictures too.

 Then we went back to the big boys and girls race course and had more fun

So our road trip turned into an adventure for me and yes I did have fun. Thanks to Steve, Earl, Greg, Henry,  Devon, Terrance, Laura, Kayla, Melandie and many more and we cannot forget to thank Spartan Race because with out them I would have probably never met this fine group of guys and gals and get to have the experience of a life time. THANK YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Friday May 30th 2014

Friday was a very busy day for me and Mammy. We had to go out and drive the van as Mammy had gotten it fixed on Thursday. So we went on the highway and we visited Granddad.

See I always have smiles for Granddad

Then we came back as my teacher George was coming but his meeting ran late so I didn't have school yeah!! Then we had to bring the van back to the garage and they checked it out and it was running good so we had to bring it to another place for an inspection. It passed!!!!!
Nanny rang and said she had gotten a delivery for me a big box. So we went over after Eoghan and Maurs came out from school. It was a gift from my running buddy Jay Hartman. I got cool things, medals from his races, an Army outfit with my own name tag (cool right!!!), cool shades, a pirate treasure chest, tattoos and my favourite mustaches!!!! Here are a few pics

Thank you so much Jay for the wonderful package

Oh its been a busy week

Well last Wednesday I had the appointment with Nutrition and yes I had put weight on. Still having the throwing up issues so they decided I should see my own GI who has been treating me since I was about a year old and see what his plan of action would be. On our way out of the office I had a seizure so Mammy decided to wait and see what would happen. Well when I hit 3mins she swiped my VNS and I kinda came out of it but the seizure started back up again. She swiped my VNS again and this time nothing happened. So it was move on to my next rescue med plan. So I got Klonopin and she waited and still I was seizing so she had to pull out the big rescue med the Diastat. Mammy wasn't too worried well that is what she was telling herself as we were just upstairs from the ER so if my seizure didn't stop with the Diastat that was the next stop for me. Well it finally stopped so we were able to skip the ER and just go home.See I was fine one minute and the next in a seizure and I had to go on some oxygen as I had gotten 2 rescue meds.

Monday I had my GI appointment and he couldn't believe how good I looked. I am going for a modified Barium Swallow study to see if I eat by mouth again since I am not on the Keto Diet any more. I used to aspirate so eating high fat by mouth was not safe for me so that is why I was getting all my feeds via peg. Even if I pass the swallow study I will still be getting most of my nutrition via my peg as I need a high calorie diet as I burn off most of what I eat in the day because of my movements. Here is me waiting in the GI's office.

We went home after the GI appointment and I got to lie down for a shot while and then it was back down to the hospital for another appointment this one was my follow up with my Neurologist. She didn't like how long my seizure clusters were lasting and that it is taking 2 meds to stop them so we are going to try a new rescue med. This one is a nasal spray and we had to go up by where Daddy works to get it made up the right way. So now we have a new seizure rescue plan on board with the new rescue med. So we will see what will happen,
We left the neuro's office and had to go to Eoghan's new school for parent night for new students and when that was over we finally got to go home. Mammy was saying a few colourful words about how people park their cars on the block and we were driving around looking for parking for awhile.

Wednesday I went and got my wrinkles taken care of hehe. Yup I got my Botox shots and they also gave me 2 Ethanol shots so I got a total of 12 shots. 3 Botox shots and 1 Ethanol shot in both legs and then 4 Botox shots between my left arm and had. The reason I get the Botox shots is I have tightness in my legs and arm from my CP. I took the shots like a trooper and only cried when she gave me the Ethanol shots.See I was a happy camper leaving her office after my shots.

So that has been my week have you been busy too? Oh well Sín é

Tada look what I got!!!!!!!!!!!!!!

Look, look, look what came for me my new jogging buggy

There is a huge difference between the old one and the new one

There is plenty of growing room in it for me

Mammy is going to make some seat covers for my new wheels so we will probably be taking a trip to Joann's to get some cool fabrics.  Mathieu put in his speak for flames and racing stripes oh and spinning hub caps.

There are so many people that came together and made this happen for me. Steve-o gave the shout out to all his friends and thanks to them I now have my new comfy new jogging buggy.
It all started with Mammy entering me in a race at Citi Field and then Steve-o stepped in and helped me to do the obstacles and then the photographer took this picture

So thanks to Spartan Race for having the special needs race at Citi Field. Thanks to the guys that carried me and my chair up and down the stairs. Thanks to Steve-o for carrying me through the obstacles and around the course. If it wasn't for Steve-o for pushing Mammy to set up the "GoFundMe" page and then giving a shout out to all his friends. Thanks to everyone who gave to my "GofundMe" Tracey Baum,  Matthew Bowen, Eric Furtado, Chasing Micheal Mills, Ryan Peters, Chris Holt, Rocco Chappie, Don Kelly, Anonymous, Risa Patterson, Sean Gifford, Danny McCracken, Anonymous, Stacy Kishpaugh, Minnia Urrey, Christopher Bonante, Anonymous, OMNES Events, Lonya Gilbert, Steve-o, Donna, Anonymous, Johanna Lopez, Janice Dolitsky, Anonymous, Karen Freeser, Carrie Anne McCollum, Anna, Rita Conway-Cosgrove, Anonymous, Venessa Laporte.
You all made this possible Thank You.

Mammy has been slacking again

Well I finally got out of Hotel CHONY. I was there for 8 days. I am having a lot of seizures in my sleep but you cannot see them so they tried upping one of my meds to see if that would help but it didn't. Then they decided to take me off of the Keto Diet as I was getting very skinny. I am now on regular formula and Mammy is keeping her fingers crossed that the atonic seizures won't come back. They tried another med for a few days it worked the first night but not after that. They also said it helped me to not have any seizures while I came off the Keto Diet.

Well I have put some weight on almost 5lbs I am getting so close to being 40lbs again. Mammy is so happy I am putting the weight on. I am going back to see the Nutritionist tomorrow and we will see how much more weight I have put on.

Mothers Day I did a 5k with Mammy it was fun she even didn't stop going up the big hill. Then we went to Mikes house and had a BBQ. When we came back Mammy and I went out and did more walking. Mammy loves walking but I like to go fast so she better start running soon.

Well she won't have any excuse as my new wheels are supposed to be delivered on Thursday. Yup my new special needs jogger is supposed to be delivered by Edgar our UPS man. We will have to take it out for a test run so Mammy better find her trainers. Oh I cannot wait for my new wheels to come. Will get Mammy to post some pictures of my new wheels.

Haha someone told Mammy she will have to add flames, racing stripes and spinning hub caps to my new wheels. She already has some flames for it and may be she will be able to get some racing stripes for it but the spinning hub caps not sure about that. Oh well Sín é.

Oh here is a picture of Mammy and me after our 5k in the morning

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