May update.

Wow! It's been a while since I've updated. It's a time issue and I also think, when things are going well, I'm afraid to jinx it ;-)

Ian has been making good progress. Albeit slower than most kids, he's constantly progressing. He's sitting very confidently and has been for a while now. We still put a pillow behind him just in case but the biggest thing that knocks him over is reaching for toys and not placing his hands in the correct position for steadying while grabbing them. And of course his sister... but she's usually good about helping him up again. He's working on getting up himself as well although it's probably going to be a while and a lot more work to get him there.

We still do therapy 4 times a week, 2 OT and 2 PT. We're working on helping him build the strength to avoid the falls and to help him to push up. Still working on crawling position but he doesn't seem that interested. He does roll around to get things he wants though. Another is standing, which has been amazing! He generally doesn't want to bear weight but we've been getting him to more and more. The PT found that if you hold him up for a minute or two he'll often eventually put his feet down. Also, he's interested in things enough that we've been using toys or books higher up to get him to stand and grab them. He needs assistance and eventual support but he's doing it! As you see by the photo. I was able to pull back and take the photo.

His babbling and words come and go. Not sure why but it's a bit frustrating. I'm looking forward to working with our friend down the street who just happens to be a speech therapist who's contracted with the regional center. We will be on track to do that at 15 months which is the earliest they start.

Overall, his health has been good. Knock on wood! I really hope summer will help us in that department. But we do have an issue at hand. His head is growing again too fast and just this weekend we noticed his fontanelle is no longer soft :-( Luckily, we have an appointment with the head of the Neurosurgery Department at Children's, Dr. Mc Comb, this afternoon. Mike is actually going with me because our course of action could need some additional opinions. His personality has not changed radically lately so we're hoping it might just be a shunt adjustment to help the pressure.

Our transition to Children's has been positive so far. Dr. Wendy Mitchell, the Neurologist whom we are now seeing is terrific! And of course we still love Dr. Platzger. Were supposed to do a sleep study last week but it was cancelled due to a machine breakdown or something of that nature. I was bummed because that will tell us a lot about where he's at oxygen wise and we could maybe start weaning off more meds to get to weaning off oxygen again. We'll have to do it in July now.

The love affair between Lila and Ian is still holding. It's continues to be an issue to make sure she's not too rough with him but in general, she's getting better and he's getting tougher ;-)

In the next couple weeks we have appointments with Cardiology, Dr. Jackie, and Neuro-ophthalmology, Dr. Mark Borchert. Dr. Pineles at UCLA told us he has strabismus and needs a surgery to correct it. We'll get another opinion from Dr. Borchert but his eyes don't line up most of the time so we'll probably have to go ahead with it. She said it was very routine outpatient and little down time. He'll still have to be put out which is the big issue, even if it is routine.