Ian's update 4-13

Our internet connection was down so I couldn't do my Blog entry as I usually do last night. So I started it on my Blackberry this morning and have done bits this afternoon/evening.

They extubated (took the tube out of his throat to take him off the ventilator) him again yesterday morning. Luckily I was there to help calm him down. My Sister and Brother-in-law were heading out of town and I wanted to be up there when they were there to see him for the first time. 

He sucked on a pacifier quite a bit yesterday. Even before they took his tube out. He was upset and had been making the baby sucking mouth (Mom's know what this looks like) against a nursing pad they had stuck in front of his mouth so the nurse grabbed a pacifier and he took it. Then throughout the rest of my visit, even after the tube was out, he was sucking on one on and off. 


I had an appointment with Dr. Tabsh in the next building and when I was gone was there. We were texting while I waiting in Dr. T's office. Since they squeezed me in, I had to wait even longer than the norm, which is usually long anyway. Turned out I was there the whole time Mike was with Ian. When I was checking on how he was doing, he sent me an image of him with a bottle in his mouth! Big step. I didn't want to get too excited but it pretty much made me break down. One of the things the neurologist had said might be an effect of the Polymicrogyria is the inability to suck or swallow. The fact that he's sucking on a pacifier and swallowing milk, is huge. Dr. Devaskar told us that it doesn't mean that he won't have problems with more complex swallowing in the future but it's a first step.


For that feeding, he just took a small amount, about 2 cc's, until he lost interest. But last night, the nurse said he took the whole thing, which I believe was 20 cc's. That was a huge deal. When we just called tonight, she said he wasn't interested in the bottle during the day so she just used the tube for his first feeding but she said she'll try the bottle for the next.


Lila again has a runny nose and her persistent cough has gotten worse. I'd taken her again to the allergist after taking her to the pediatrician and getting no answers again. The allergist put her on some meds I can never tell if it's allergy related or if she's getting sick. This is the case so often. I finally took her to get an x-ray of her chest & sinuses today to see if we can get some answers. We have an appointment with the allergist to go over it tomorrow. 


Now Mike & I both seem to be fighting a cold or some kind of sickness which means we can't see Ian. This is so difficult because he's getting better and we both want to be there for him as he's "waking up". And, we just never know if this will turn into something that will last a while. It's bad enough when I just thought it was me feeling off but when Mike said he was as well we both became very frustrated.


We had an interesting conversation with Dr. Devaskar before she headed off of her watch tomorrow. I'll include some of that in an update later tonight or tomorrow. Right now, I've just got to get some sleep.