Good news and bad news

The title of this post could have been "Seizure free for 2 and a half weeks and counting!" except we saw 5 seizure jerks last night. Darn it!

It was the longest period without seizures since it all started last summer. It is awesome, but to get to this point, there were some hardships to go through. Caleb was rushed to the Children's hospital about 3 weeks ago in an ambulance. He was having a hard time breathing and looked extremely distressed, and it was 4:00am when we called 911.

Andy rode in the ambulance with Caleb, and I followed them shortly after in our car. So it was Caleb's 5th admission to the hospital. They diagnosed him with asthma; history proving the case with 2 previous admissions due to breathing difficulties. And it was good and bad. Bad, because of the obvious reasons, and good, because now we can help him with puffers before he gets to the point of respiratory distress.

They gave him oral steroids for 5 days at the hospital to treat his lung inflammation, and we think that might be why Caleb's seizure activities stopped. But then again, other factors have changed during the same time period, like our neuro Doc upped the dose of Clobazam the day before Caleb got sick, and also about a month ago the Ketogenic Diet ratio went up to 3:25 to 1 from 3 to 1. So we don't know what contributed where, but whatever the reason was, it was great to see him seizure-free.


Caleb's been very happy since the discharge, and his oxygen level is much better with daily asthma puffers. And he does not fuss when he is on his tummy! Who is this baby? Caleb used to HATE to be on his tummy and would roll right away to get away. But now, he will be on the floor for more than 30 minutes at a time without any complaints. I am delighted to see him on his tummy because he gets to work on those muscles.

Above picture shows what my cats went through when my nieces stayed with us. No one's life is easy, I guess.

What's up?

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 like, 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.