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
No comments:
Post a Comment