Sleep study & shunt tapping this week

So our Pulse-ox machine must be off completely as must my instincts. We did an overnight sleep study Sunday night and it showed, as did the last one, that Ian needs to be on 1 liter of oxygen to be satting 98-100. I've been testing him without oxygen a couple hours at a time for a couple months, and actually did my own little nap study the other day, and he was satting 98-100. Even when he was really sick, he was only down to 96-98. I watch him and he seems like he's very comfortable breathing as well. But I will just go with it, give him the liter and try not to have him off for any time but changing the cannula. There are definitely worse things, I just don't understand why his needs have gone up rather than down.

On the brain/head front, again, I'm so confused. Dr. Graham and his team suggested that maybe he didn't need the shunt because his head growth continued due to his brain growth. Now the CHLA team wants to tap it his shunt. Dr. Mc Comb will be tapping it on Thursday to see if it's working. This was on the suggestion of Dr. Borchert (Neuro Opthimaology). I had a conversation with Dr. Borchert about this and he explained that he is worried about Ian's optical nerve damage. And of course we appreciate his concern so we'll do it. They say it's a simple procedure of sticking a needle in his head and drawing fluid out. We'll see how it goes.

So if it's working, we then do another scan, either CT or MRI to try to understand his continued head growth. If it shows to be working, we will be also getting an opinion from Dr. Danielpour at Cedar's. Supposedly he's the local expert on kids like Ian with Megalyncephaly/Macrocephaly.

Of course if it's not working we need to decide how to handle that. Usually means an adjustment. We'll deal with that decision when we have to.

And, we are all sick again! Already we've had two bouts of sickness. I think I'm going to go crazy if we are sick the whole school season. Might mean taking Lila out. Since she is still in preschool we can do that. But I hate to because she gets so much out of it and it allows me to have appointments and therapy with Ian in peace ;-)

We met with a nutritionist before summer and she suggested a bunch of whole food supplements. At the time it was too much to deal with but I'm revisiting it now. I'll try a portion of what she suggested to get started and see how it works for us. We have a bunch of friends who's kids have been helped by these.