One of the reasons why I made this blog in the first place was to let people know how Caleb was doing, so that I didn't have to tell people individually, but as I've failed to provide any updates on how he's been doing for a couple of months, I feel that I am getting more and more "How is Caleb?" questions."He is OK" has been my unsatisfactory answer to everyone, but now that we got our place back to ourselves(and Caleb is napping at the moment) I thought I would write some more specifics about how Caleb is doing.
Caleb still has seizures most of the days, and the pattern has been changed too. For the past few months, he had seizures only when abruptly waken up(by noise,or being moved while sleep etc.) and Caleb's neuro Doc said it was definitely better than having seizures li
ke, whenever. But since last week, he's been having seizures without any triggers, even though they still happened around sleep. He will wake up suddenly from a nap and have seizures, and some of the seizures were more intense, with Caleb not coming out of it between jerks, looking like he wasn't breathing. We are keeping an eye on this.Also, Caleb is still on the Ketogenic Diet, and we recently upped the ratio to 3.25:1. He also joined the omnivore world by adding meat in his diet. His Ketone levels are pretty good, but he seems to sleep more since the ratio change.
Development wise, he hasn't progressed a lot, but we noticed that he has better neck control, and he can kind of roll over from back
to tummy, but he still doesn't know how to pull his arms out. Because he cannot sit up by himself, we had to get special equipment called the Kid Kart- it's like a baby wheel chair with armpit supporter for proper sitting and a butterfly for trunk support. Even though it does not look like a traditional wheel chair, it still stands out and people tend to look. Also his helmet and oxygen tube on his nose put Caleb into 'Boy-you-look-really-sick' category even among the children visiting the hospital.We are hoping to get rid of the helmet and the oxygen in about a month time. It will be nice when people see Caleb first before being distracted by all the equipments.
It was such a huge step for us to get a helmet for Jade because, as you say, people see that before they see the child under it. Is it possible that Caleb's having a growth spurt that has changed his seizures? Teeth coming in? We found these things had an effect on Jade's seizures -- thank God she's finally done teething until she starts getting visits from the Tooth Fairy.
ReplyDeleteThanks for the update. Caleb sure is a cutie!