Are we sure Gabe had EB? Was he tested or is this just a guess?
The photos of Gabe on this blog are touched up. His skin was like Jonah's - his hands were completely raw, and the skin was sloughing off in other areas. We were told at the time that this was just because he had died in utero. We had an autopsy done and genetic testing, and both revealed nothing. However, to find EB, they would have to have done special skin biopsies to test specifically for it. Obviously those were not done because we had no idea. We know now that it was much more than just skin slippage from having died. It was more severe than that, and the autopsy came back saying he had been dead at least 72 hours. He had only been dead 36-40 hours at the most.
Does EB get less intense with age? If so, why?
Again, I'd have to defer to the experts. I know Simplex tends to get better with age. I'm not really sure, unless it has something to do with the skin becoming "accustomed" to more... similar to working through a callus stage when learning to play the guitar??? Junctional, on the other hand, is much more severe, so I don't have any idea what the outlook is for Jonah. I have been told by Adrienne (the mom who has the 3-year-old JEB daughter) that his skin will toughen up some, and he'll be able to handle more. But I also know that all EB cases are different, so there's really no way to know except to wait and see how Jonah presents.
Do I like The Office? Which character is my favorite?
I like The Office very much, although I haven't watched any recent episodes. I'm going to have to catch up online, so don't say anything. My favorite character is Jim. His facial expressions are hilarious, and half the time I'm cracking up, and he hasn't even said anything. My favorite episode ever is the one where Dwight is telling all the stuff Jim has done to him like weighing down his phone with nickles over time, and then taking all the weight out, so Dwight would smack himself in the head. That episode is hilarious.
Have you ever considered writing a children's book about EB?
I've always wanted to write Children's books in English and Spanish and have my brother illustrate them. I'd still like to do this. I hadn't really considered writing one about EB, but it's a good idea.
Matt and I started dressing change at 5:50 tonight. We were done by 6:49, but then Jonah spit up all over himself, and we had to redo one of his arms and his torso. So then we were done by 7:13. We still gave him the Morphine and Ativan at pretty normal times, but just started dressing change early. He was pretty happy through all of it, and definitely not in any pain, so that was very encouraging. And guess what I'm doing now? Watching the Lost season finale. Relaxing. Having a "normal" night. Jonah has been asleep since about 7:30, so he's apparently not caught on to the new schedule yet, and will probably have us up all night. Oh well. Once he gets into the new groove, I think we're going to love the new way of doing it. And that way whoever is with me during the day can just stay and help with dressing change rather than us having to find a second person for the evenings. I think it will be better for everyone, including Jonah.
No creative ideas or funny jokes tonight. Just glad to be sitting on my sofa watching television. More tomorrow.