Thought I'd give you a little Jonah update since it's been a while.
We're now down to three bottles a day: 9:00, 2:30, and bedtime (around 8:00). We're trying solids in between at 1:00 and 6:30. He's still not interested and won't take more than about three bites. I've tried everything. Really. So now we're down by a bottle, eating anywhere from four to seven ounces less than he was getting when he was taking four. BUT it was a struggle to feed him that 4:00 bottle. He didn't want it. He wasn't sleepy so there was no forcing it, and it had gotten to where if he ate four ounces that was good. And it was pulling teeth to get him to do that. I think he wanted to cut back, and as much as I can, I'm trying to let him set his schedule. But it bothers me that he's getting fewer ounces and not eating solids. He still won't touch a sippy cup. I've tried most of them and several cups the OT gave me to try.
Whatever. It is what it is. We have an appointment with Kids Eat (a children's eating therapy program comprised of a speech therapist, nutritionist, and a pediatric doctor specializing in feeding issues) on April 5th. Honestly, I'm not sure anything short of a miracle can help him. It's all psychological.
Sleeping has gotten a TON better. Jonah, for the most part, now puts himself to sleep. I still hold him for his morning nap since he falls asleep while he's eating, but he now takes an afternoon nap in his bed. True, it's only for thirty minutes, but I also get the thirty minutes he lies in bed and talks himself to sleep. I go up to his room and feed him at 2:30. He falls asleep during the bottle and then I put him in bed. He immediately wakes up. I get him out, make sure he doesn't need to burp, and then put him back in bed. He cries for one to two minutes. I lie in the floor (out of sight) and listen out for puke noises and if he seems okay, I come downstairs. The problem is there's about a 25% chance that laying him down and him crying hard (if even only for a minute) on a full stomach will make him gush. Which is really bad when he's lying down... but still, worth the risk.
AND he's sleeping through the night. Going down around 8:30 or 9:00 and we don't have to go up there until 7:00 or 7:15 in the morning. Even if he wakes up, he usually lets out a cry or two and SELF SOOTHES himself back to sleep.
GLORY, GLORY, HALLELUJAH!
Even before when he'd sleep through the night, he'd wake up screaming around 10 or 11, and we'd typically have to go back up and re-rock him and it was a struggle to get him back to sleep. But now he's really got it. And so far, his face has looked better than before, so apparently he's not doing any face rubbing as part of his self-soothing process. The puke risk is the only thing that worries me and like I said, so far, has been totally worth it.
His toes are blistered, but aren't doing too badly. Basically he got some big blisters the first few days and they've spread. But we're not getting big ones daily or anything. His left foot really worries me. His second and third toes are badly webbed to the bottom of his foot. And I worry that leaving his feet unwrapped won't stop the webbing. But there's really no way to wrap his toes separate from the bottom of his foot since the space there is already gone. I don't know. It causes me lots of anxiety. I'll probably know more after his April 15 dermatology appointment.
We are on the last two tiers of genetic testing for Junctional EB. I think they are testing LAMA3 and Collagen 17 now. If he has Junctional, I think we will find a defect in Collagen 17. If they don't find anything on these last two genes, it's likely that his biopsies were wrong, and he may have RDEB. I got nauseous just typing that last sentence. I can't even go there at this point. I'm praying he's just a more mild Junctional. The webbing scares me though. It really does. We should know in about ten weeks.
So that's where we stand right now. He's eating enough but not interested in solids or a sippy cup, and for anything over four ounces has to be asleep to take a bottle. He's sleeping like a champ. His feet are worrying me, and we're still waiting on genetic testing results. Lots to be anxious about but even more to be thankful for.
And he's as adorable as ever (with lots of "Mommy, if you are anywhere in my line of sight and NOT paying direct attention to me" whining thrown in).
Hope everyone had a good weekend. We didn't make it to church. With the time change, we wouldn't have been able to get dressing change and his morning bottle/nap done in time without having to wake him up and get him out of bed an hour early. I didn't feel good about that. But I did miss getting to go to church. Hopefully next week.
