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