Evan turned 8 years old on October 22, unfortunatley we were in the hospital for seizures but they made it so special and the bonus was we got to go home that day as well. The Child Life team at Sutter Memorial is awesome.
They made a huge sign for him, He loved it.
He also got a pillowcase full of toys and stuff.
The Bucket full of Dinosaurs was his favorite.
We had a small birthday party for him a few weeks later at home. It was nice and small and just what we needed.
Ketogenic Diet-
Back in September when we started the Ketogenic diet it was more of a modified Atkins version of the diet. When Evan began having clusters of seizures again in the middle of October and we ended back up in the hospital we decided along with the dietician to switch to the more traditional ketogenic diet. This means that Evan has 4 meals a day and each item is weighed in grams. It is a high fat, low carb and low protien diet. It is a lot of measuring especially if I want to make him a recipe such as pizza, pumpkin pie, pancakes, muffins etc. I made him a Keto cupcake for his birthday party and he loved it. He was content to eat his cupcake and did not make too much of a fuss over the fact that other kids had different cupcakes.
So far the biggest challenge we are facing is that Evan wants to eat more than what is allowed. But his dietician has assured me that his calorie intake is the same. We usually just try to distract him until he can eat again. Evan still gets formula as well.
So the big question you are wonder I'm sure is how are the seizures now that we have started the traditional diet?
I try not to get too excited or get my hopes up but I am happy to report that seizures are being held at bay right now. We had an EEG in early November and visited the neurologist on November 20th. He was excited at how great the EEG looked while Evan was awake. We eren't able to get Evan to go to sleep so we will do that in a couple of months at our next visit. I have noticed some intense staring periods where I come upon Evan and he just has this horrible blank stare on his face and he usually takes a few seconds to come around or answer to his name. I'm pretty sure these are seizures but as along as they don't start coming every day or in clusters I'm happy.
School-
Evan seems to be perking up and being more active in his classroom. I am not getting daily phone calls about him so that is great. Right now I am working on getting Evan some important supports that he needs at school. The school district wants to move Evan to a lower functioning classroom. The whole process is frustrating. I just want them to look past his medical needs and see the smart boy who can and will learn. I was thinking about just giving in because I thought they were right and he did regress due to seizures but after visiting the classroom they want to move him to I changed my mind. He is at a higher level than most of the kids. While I love the school I am afraid he will lose progress if he is not being challenged. I'm in the process of talking with an advocate to see what my next steps will be.
Here is a pic of Evan's birthday party and his pathetic little Keto cupcake that was too soft to hold the big old 8 candle I bought. LOL
All in all, life is going very well for us and Evan. If we can keep up his good run of few to zero seizures I will be thrilled.
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