Speaking of being tired last night...
When I pump, I have to write his name, date, and amount on the storage bags (I fool with all of this just in case we end up in the hospital, I want his milk labeled). But last night, I was so tired, I was writing on them with my eyes closed.
One says - Name line: "Jonah Williams (hope)" Date: 12-15-09
(um... what? Apparently I was having a very optimistic, you'reheidiklum kind of a moment in my sleep...)
The other says - "Jonah" and then on the date line it says "Elastic in work" (???)
I'm really tired.
Jonah is doing well. He's still eating well for the most part, although he'll eat 115 cc one time and only 60 the next. I can't figure him out. If he would start eating more and consistently throughout the day, I'd probably eliminate his midnight feeding (we always have to wake him up for this one since he's still pretty tired from his dressing change and the drugs), and just feed him at 3am and 6am.
He's still having some stridor at night from about 10pm (when we finish his dressing change) to midnight when we wake him up to eat. I don't know what the deal is or what's causing this or why it's only isolated, but it still freaks me out. I went to bed crying last night worried about him. I hope we're not missing anything. When he gets a little older, we may make a trip to Cincinnati just to get a comprehensive look at him from an EB perspective . I'd love for him to be checked out by all these specialist doctors who have EB experience. We do have an appointment with Dr. Morrell in Chapel Hill (a pediatric dermatologist who sees several EB patients and trained under Dr. Fine) in early May, so I'm excited about that. I wouldn't want to travel very far with Jonah before that anyway.
I think Matt's mom and I are going to take Jonah out to Lowes later this afternoon. I need to pick out a light fixture for over his dressing change table they're putting in down in the basement. It will be Jonah's first non-doctor's office outing. I'm nervous and excited, but figure Lowes is a pretty good place to take him - big, open, airy - not many women or children who will be trying to touch him. Why do people think they can just walk up and touch your pregnant belly or your baby? All social code goes out the window. It's so strange. I don't want to have to go mama crazy on some poor, innocent well-wisher. HELLO, the bandages should tell you something. Back off, woman!!!
This may be my only post for the day, especially if I try to get in bed before 1am.
Please continue to be in prayer for Jonah's stridor issues. Please pray that it's nothing or that if it is something, it will be obvious, and we will catch it in plenty of time.
All I keep thinking is 47%... I want to hear the Voice of Truth, not the voice of the deceiver.
A few pictures Leigh took while she was here. Leigh is also the one who started the Facebook prayer group page. Thanks for all your hard work, Leigh. We appreciate it so much!
Still me with no make-up...