Gabriel is 5 months seizure free! It is so exciting to type this! He starts school in a couple days and I can’t help comparing this summer to last summer. What a difference! We were truly in the valley and now we are out! Yippee! I’ve been doing some serious organizing and purging the last few days and came across things I do not miss at all! We are not having to obsessively track every bite he eats to later match it with the seizure log to see connections. We are not having to keep a seizure log! We not having to test of ketones in his urine every day. We are not having to use diastat (valium) to stop long seizures. We are not having to call 911. We are not having to hover over him like you do a baby taking his first steps. We are not having to make sure his helmet is either on his head or at arms reach. AMAZING! Last summer was awful! Stressful and scary. This summer has been fun and relaxing. I didn’t make a bucket list of things to do but tried to remember to stop, enjoy the moment and take the extra adventure when possible. We didn’t do big things but things like going to the swimming pool or having a playdate became BIG because Gabriel was able to be present and fully participate!
Things continue to go well with him off of Keppra. We have our next appointment with his specialist at the end of Sept. We are hoping to wean off the diet. We really don’t think it is doing any good. Especially as we continue to read about the children having success on the diet, and there are many, Gabriel’s story just doesn’t match. His story is the day he started taking Felbamate his seizures stopped. We know the seizures can come back at anytime…he has been having some sleep issues lately and caught a cold with a cough yesterday. It is amazing how “normal” little hiccups in his pattern cause such concern for us. It is justified, these things can be indicators that seizures are coming or things that cause them. But thankfully so far they have stayed away!
I realize I no longer mark time by seasons or events but by time without seizures. School starting is a big deal! A big marker for most families. I am literally afraid that I am going to forget to take Gabriel on his first day of school on Thursday. While I am excited and it is a cool thing that he gets to go to a great preschool, it seems very insignificant. He is happy, healthy and developing and the treatment regamin is on right now is allowing his brain to make these things happen.