What keeps Jonah's hair from falling out?
I'm not sure it isn't thinning out a little. It will thin out. That's a common thing with Junctional. I figure he'll probably want to keep it buzzed when he gets older, but I don't know how bad it will be. Right now he's got a bald spot in the back, but I don't know how much of that is EB and how much of it is just typical baby rubbing it bald.
What kind of breast pump do I use? Do I nurse at all?
I use a Medela Pump In Style that is almost eight years old. It is gently used (gasp!) and was given to me by my sister-in-law. I bought all new tubing and bottles, so basically all I'm using second hand is the pump itself. I like it a lot and even took it back and forth to the hospital because I liked it so much more than the stand Medela pumps they have there. It's a lot faster. I can't breast feed at all (as much as I'd like to) because we have to make the milk a 24 calorie formula, fortifying it with Similac Advance Soy Powder and Beneprotein. It's really important that EB babies get extra calories since they are constantly regenerating skin and trying to resist infection. Plus, if I nursed, I wouldn't know exactly how much he was getting, and I'm pretty neurotic when it comes to knowing his intake. I write it down (to the exact cc) every time he eats.
Would silk sleeves help protect his face? Is there anything we can do to protect him?
We do put satin mittens on him over his bandages although they tend to fall off (they have ribbon, not elastic). I've also begun swaddling him in his miracle blanket to keep him from hurting his face in the middle of the night. It seems to be helping some, although even with the mittens, he still gives his face a good wacking during the day. He's got a lot of blisters around his eyes and on his eyelids right now.
What kind of therapy services will Jonah get?
I'm not exactly sure. I have the nutritionist scheduled to come and the OT will come next Friday. If you looked at the comments on the previous post, you'll see that Sara posted some stats for Junctional EB babies and where they are slow in developing. Our first order of business will be working with his hands, but I'm sure we'll have to work on other things (sitting up, walking etc) as time goes on. I'm sure he'll be delayed in using his hands because of how painful it will probably be for him once they are unwrapped and blistered. Same thing with walking... he may not walk until two or three years old, because of pain/fear of pain.
Will the doctors give Jonah anything to counteract the withdrawal from Morphine? If he's in pain, why are we taking him off?
We're hoping he won't suffer withdrawal, and no alternative medicines have been brought up. I don't think he'll need any. We're going down on both the Morphine and Ativan by one hundredth of a ml every day, and so far so good. It's so slow I don't think it will affect him negatively. Plus, he weighs a lot more now than when he started that dose, so he's already weaning himself. We have read that EB kids have a high tolerance to pain, because it's just a constant part of their life. However, Jonah is in pretty good shape most of the time except some isolated areas, so I think the dressing changes are less painful to him and more just annoying. Matt and I feel his pain can mostly be controlled by occasional Tylenol or Motrin (once he's older). So when the Morphine and Ativan are more for our convenience than his pain, it's time to get him off. We should have him weaned of both in 20 days. I'm excited. At that point we'll start doing the dressing change as soon as Matt walks in the door. So hopefully we can get started by 5:30 (I'll hopefully have already given him his bath), and be done by 7:00. We'll be able to go out to dinner or to a movie or just sit on the couch and watch a TV show... in real time. Wow.
Let me know if you are getting bored of this question and answer stuff. I don't feel like this is all that interesting, but you guys asked. So there it is.
My mom came over right after work today, and she and Matt's Aunt Patsy kept Jonah so I could get out of the house. (Patsy and I were going to take Jonah to Target earlier in the day, but he hasn't pooped in over two days, and I was worried he would choose the Target trip for his poop escapades... which would mean not only a back of the car diaper change, but also a back of the car leg rebandaging - when he goes, he really goes. He acts really constipated and is not eating as well because of it, and I've tried juice twice - which usually does the trick - and still to no avail. Poor thing.) Anyway, I went to Target myself, and it was glorious. I have never liked shopping by myself, but now, for some reason (hmmm), I totally dig it. I won't do the "what was on my list" versus "what I actually bought" post today, because I would be ashamed. Let me just say the extras may or may not have included Little Debbie Fudge Brownies... and Fudge Rounds... and a new skirt... and eight cases of soda (hey, they were on sale). Maybe that can be my weekly post - you know, like Not Me Monday or Show Us Where You Live Friday. We could call it "Confessions of a Targetholic. Who the Heck Cares What Day of the Week it is?" Is that title too long? It's a work in progress.
Because I've been struggling for blog ideas, Katherine got me a new book called "No One Cares What You Had for Lunch. 100 Ideas for Your Blog." You guys are in for it now...