What kind of clothing does Jonah need / can he wear?
My friend Kathryn's mom, Jeannie (who is also my friend), sewed Jonah some satin lined shirts. He can wear regular pants because between his diaper and his leg bandages, they don't directly touch his skin. He could probably wear most things if I did a halter bandage around his neck, and then put a onsie on inside out under the outfit. The only problem is that it's already getting pretty hot here, and three layers when it's 85 degrees out certainly doesn't help Jonah stay cool. So... what I'm concerned about are the seams under the armpits (one of the few places not bandaged) and around the collar. Every where else is pretty much covered with bandages. That's why I've been putting him in those little overalls with no shirts. He could wear anything if it was lined with a soft material, and no seams would be touching his skin. I may get more brave and try regular clothes with just the halter bandage (without the onsie inside out), but so far I'm not there yet. I figure I'll just look out for more of those overall outfits and let him wear those shirtless to get us through the summer.
What will we do when Jonah starts crawling/walking to protect him?
Um...Er... I dunno. I'll have to educate myself and defer to the EB pro moms on this one. I'm sure - just like anything with Jonah - it will involve some creative problem solving and layers of padding. Probably no matter what we do, he will get banged up. Maybe a couple layers of bandaging with soft tube socks over his knees to hold them on? I'm so flying by the seat of my pants these days... crossing those bridges when I come to them... (and other such cliches to tell you guys that I don't know what the heck I'm doing...)
Will EB affect his diet as he gets older?
EB can very much affect a person's diet, although with Junctional I don't think this is as likely as with Dystrophic. Junctional doesn't usually affect the esophagus (I don't think). He will have very weak enamel, so is likely to have many dental issues as well as blisters in his mouth, so in that way, it could affect his diet. The mom I go to for all my info (her daughter has Junctional non-Herlitz and is now three years old) says she can eat most anything, even taco chips if she softens them in her mouth before chewing and swallowing. I'm encouraged that Jonah hasn't yet had to have a g-tube (like many JEB kids do), and hope this is a good sign as far as what his esophagus and stomach are able to handle. I think the bigger issue affecting his diet will be blisters in his mouth and weak teeth.
What kind of dog do we have, and how is he dealing with all the new change?
Deac is a Lhasa Apso. He is four years old and pretty much the BEST dog you could ever ask for. He comes when you tell him to, stays when you tell him to, and if you say, "Deac, stand up for Jesus," he'll stand up on his hind legs (thanks to Grandaddy). He's having a rough go of things right now. Not that he's being bad or anything, but he's just being super needy and always lying right under our feet. A couple times (I posted a picture), he jumped up on the rocking chair with me while I was feeding Jonah. And believe me, the rocker is not that big. When everyone now talks to the new kid the way they used to talk to you, I imagine it's all pretty confusing. I feel bad for him, and we try to show him plenty of attention, but it's tough to convince him that things are like they were... because they obviously aren't. I think he will come to love Jonah as he gets older, and they can play together.
How did we choose Gabe and Jonah's names?
I think Matt's dad was the first to mention Gabriel as a name choice. Then, when we looked it up and it meant "devoted to God," that kind of settled it for us. I always like Bible names, but not the ones that are so common. I also liked that Gabriel works in Spanish and English, as it was my hope that I would speak Spanish to him from the beginning, and he would be bilingual. Jonah we also chose because we liked the fact that it was a lesser used Bible name. I didn't think Matt would like it, but was going through the baby book and suggested Jonas. He said he preferred Jonah. I said that I did too. We had a couple other names we were considering, but we settled on Jonah within a couple days. It was really important to me to name him early in order to help me with the bonding process. I had a really hard time the whole pregnancy letting myself be hopeful enough to imagine we'd be bringing a baby home. Calling him "Jonah" instead of "the baby" was really instrumental in helping me separate him from Gabe and helped grow the bond I was not letting myself feel.
Speaking of Gabe, I'm really missing him tonight. I was just looking at their pictures at the top of the blog and thinking how much they look alike. I get sad that I can't imagine Gabe as a one-year-old, but can only picture him as the newborn I have pictures of. I've been frustrated today - Jonah has been high maintenance, dressing change was extremely hard tonight, in an attempt to get boogies out of his nose so he can breathe and eat, I pulled some of the skin lining his nose out... etc. I'm just feeling a little overwhelmed. I'm tired. I know tomorrow will be better. But in these moments of weakness, not only do I feel guilt (although I know irrational) for feeling frustrated with Jonah, I also think of Gabe. I wonder how in the world I can feel irritated with Jonah when I lost all my time with Gabe and begged and begged for Jonah to live. I miss him so much and love both of them so much. And I just wish I was good at showing it all the time. I feel like all I want to do is make him proud of me, and I fail over and over again. I need to get out of the house. :)
I wrapped Jonah in his miracle blanket tonight. His great Aunt Melanie gave it to him, and I've yet to try it, just because I wasn't sure he could be swaddled. But most of him is bandaged, and the seams aren't thick or rough, so I'm giving it a shot. He's getting really strong with his arms, and although he's wearing satin mittens over his bandages, he's really wacking the crap out of his face. It's my attempt at preventing further blisters. He's face was healing up really well, but yesterday, he started getting a lot of new blisters around his eyes and forehead.
Maybe it will make him sleep all night??? (yeah, right)
I'm going to pretend. If I go to bed right away, I might can get four hours of consecutive sleep. I need about 48. Seriously, I'm pretty sure I could sleep that long.