Saturday, May 9, 2009

CHOC day 6

Last night was particularly rough. I'm not quite sure what is going on with Maryam in her sleep. It seems that about 3 hours after she goes to sleep at night she starts having these fits in her sleep. She starts whining, moaning and crying and then starts pulling her hair out. The weird part is, when she's pulling her hair she's not whining, moaning or crying anymore. This went on for a couple of hours last night. The weighted blanket didn't seem to do anything for her. She just tried kicking it off and when she couldn't she got more agitated. I talked to Jamie, one of Maryam's OT's about it this morning and she suggested trying tighter pajamas. She wonders if the looser material just touching her skin is driving her nuts. So tonight I'm going to try tighter pajamas. I did end up resorting to brushing her exposed skin last night in her sleep. It did seem to calm her a lot which really makes me believe that she is genuinly seeking stimulation in her sleep. Its pretty freaking heart breaking that she is seeking so much stimulation that she resorts to pulling her hair out though. Ugh.
We tried her on the new 1.5 cal/ml formula last night and she didn't have any tolerance issues with it. She didn't move a muscle until about an hour and a half after the feeding was complete.
Last night dinner went well. She ate 2 ounces of pureed spaghetti, 2 ounces of chocolate Ensure pudding and 4 ounces of whipped cream. She is still not wanting to drink much of her Pediasure which is driving me nuts. She has to be thirsty, right? I stopped giving her the allowed 4 ounces of water with the hopes that it would drive her to drink more of the Pediasure, but so far that isn't the case.

This morning she ate and got to play in the ball pool. I think that is her new favorite thing in the whole wide world. This afternoon after a pretty good lunch, Daddy took her out for a stroll while Mommy tried getting a nap. After her 3pm snack she went into the play room where Daddy taught her how to play air hockey! She does the cutest little celebration when someone scores, she doesn't care who!

1 comment:

Sarah said...

Wow Jennifer! Everything seem so intense! Thanks for taking the time to update the BLOG... it is so nice to be able to follow you two along on this incredible journey. The pictures are great, I'm sure she thinks she owns the place. The progress is great and I am looking forward to hearing more.
I love you both.