Back to school

School days resumed! Well, after spending his supposed summer "break" mostly in hospital, Andy is not exactly excited to go back to work. Also, I feel the pain of sole night shift duty to feed Caleb. Caleb is not sleeping through the night yet, but every now and then, we get lucky.

We are not intensely vigilant in counting seizures anymore, as Dr. Bello advised. We count only the ones that we see, day or night. No video taping overnight either...It makes our lives little bit easier. And today, I didn't see any seizures, really.

Caleb is doing really good. I was wondering if he was way behind the developmental milestones, but when I checked 4 month milestones, he is not far from them at all. Actually I think he is almost on target..

Here is the picture of him today with his head up!

And ready to roll over with Tica the cat's supervision

(he can do tummy to back, but not back to tummy yet)

A somewhat normal life

Caleb is still doing pretty good. He is having a few clusters of short seizures and jerks a day, but compared to 80~90 a day, it is still really good.

His mood is good, and it's such a delight to see him smile, it just lightens my heart.

We went to Value Village(our favorite store...out motto is "to be frugal"!) and Walmart today.

It felt good to go out together again after a month of being in a tumultuous dark tunnel. It feels like we are finally having a 'normal' life again. We cannot predict anything about Caleb's future, but we are happy today as we take it one day at a time.

Caleb is growing so fast that he wears clothes 12 months +(he is only 4 1/2 months old!). When a doctor came to see Caleb at the hospital, she joked to the resident who came together, "As you can see, he is just wasting away!"

Through all the seizures and everything, he didn't stop eating well which is a real blessing considering that many PMG kids have swallowing issues(thus eating difficulties). He is a real trooper, and my love for him is stronger than ever.

A good day

It's been 24 hours since Caleb had a real seizure, except for a few 1 second ones! He still had many jerks/twitches, but this is the best day ever since he started having seizures a month ago.

I also noticed that his neck control got better, and most of all, he is smiling again!

For the last 30+ days, he had regressed, lost his neck control, and hardly smiled or cooed, but things have changed since yesterday.

So is this new medicine, vigabatrin, the magic pill? It's too early to tell, and the doctor said it's unlikely that Caleb will be seizure free. I am also aware of the fact that he can develope different kinds of seizures growing up. But then again, I believe God can do miracles. So why not hope for the best?

Whatever may come tomorrow, we will be celebrating the victories of today, and watching Caleb smile again is a big reason to celebrate!

Another EEG done

Caleb had another EEG done today.
The doctor said his EEG looks about 20% better than the last one, also it does not show hypsarrhythmia(I know, it's a mouthful) which is an EEG pattern that typically shows up in children that have Infantile Spasms.
Caleb's seizures went down from around 90 a day to about 35.
We will be going home tomorrow after 3 weeks in the hospital!