Sleep Study ** updated**

** Update**

Well, we survived the sleep study. All in all it went fine. He didn't like having all those wired put on but he handled it pretty well, all things considered. Finally by about 9:30 they were done getting him ready and so 2.5 hours past his bed time, we tried to sleep. He didn't want me to leave his sight - he would cry when I tried to go into the bathroom to change my clothes and get out of his sight, thinking he would fall asleep better that way. Every time I would go in there he would start screaming, so I threw on my jammies and threw washing my face, brushing my teeth, etc. out the window... laid down on the bed next to his crib and stuck my hand through the crib rails for him to hold. He fell asleep right away once I did that but if I moved even the slightest bit his eyes would fly open. After about 15 minutes I was able to move my hand and try to sleep as well.

So technically he was asleep by 10pm. He woke up about 3 times on his own, frustrated about the wires and would thrash around and cry but then go right back to sleep. If it had just stopped there it would have been fine but the nasal cannula in his nose that measured carbon dioxide levels( the part the doc was most interested in, of course) kept coming out and so literally about every hour the nurse( or rather, respiratory therapist) had to come in to fix it. She said that most babies don't wake when she just has to fix that, but Cohen is not like most babies. Before she hardly would touch him, he was awake, screaming and rolling away from her in the crib. I had to roll towels up and put them around the crib because he kept hitting his head on the metal crib rails because he would roll away with such speed and force. He would, at least, go back to sleep pretty quickly...only to be woken again about 45 minutes later.

I felt bad for him and the nurse. He just wanted to sleep and she just had to do her job. One of those necessary evils, I guess.

In the morning, Cohen was NOT happy to be woken again and cried horribly while getting all the wires off. Seriously, every time the nurse would talk he would scream at the top of his lungs, even after we were all done and changed and in the hallway saying goodbye. The other nurse( who was monitoring a def. child) could talk to him and he would smile but as soon as our nurse talked, he'd start up again. I guess he holds grudges!!

We made it through and both took a 2 hour morning nap!!!

I didn't end up taking any pictures of him with his wires on - there was never an appropriate moment for that - but I did snap one of a very unrested, goopy haired, wire free Cohen in the morning...


*original post*


We meet to get the results Oct. 8 but the nurse said off the record that things looked pretty good.

Once again, I'm falling so behind on blog updates. I was on a roll there for a while...I'll catch up again soon but wanted to let everyone know that Cohen is having a sleep study tonight. It wasn't going to be until Oct. but they had a cancellation so we're going in tonight. The timing, while a little rushed, is good because this way we'll have his results back before we see the neurologist too.

We had our first appt. with " the sleep doctor" last week and we LOVED him. He has been the most knowledgeable( aside from our geneticist) doctor about dwarfism we have seen so far. He explained everything so well and was interested in the things I felt like he should be.( did that make sense?) He was very interested in his chest size...something I haven't figured out why other doctors don't seem to be since that is the very thing that made the doctors think he could never live and the very thing that makes his future uncertain now.

He is not super concerned about apnea with Cohen because his structure looked so good but he does want to check for it still and was interested in his input and output of oxygen and Carbon dioxide.

He doesn't exhibit a lot of systems of apnea but does have some restless sleep and also sleeps more than an 18 month old "should" in a 24 hour period.

I'll take Cohen in to the hospital tonight and Chris will stay with Cort. Hopefully Cohen will actually sleep!!!!