answers, part 3 and "ask matt"

Where do I get my sense of humor?

Both of my parents can have funny moments, although neither of them is known as the “funny guy,” especially not my mom who is, in fact, a gal. Actually, my grandmother (my mom’s mom) had a really sarcastic, sometimes slightly inappropriate sense of humor, which I found hilarious. Maybe I get it from her. If you can learn a sense of humor, I’d say my brother taught me a thing or two about being funny. He’s the most hilarious storyteller I’ve ever known. But he’s also done a lot of really stupid stuff so he has lots of good material (a post on all that coming soon to a blog near you).

Matt strikes us as quiet and reserved. Is this true or is he just as "witty and sarcastic" as you are?

If I were one to use the term LOL (which I’m not), I’d use it here. “Quiet” and “reserved” are definitely not words I would use to describe Matt. “Loud”, “crazy”, “hilariously inappropriate” might be a few terms I’d use. Let me put it this way: he should have been on Broadway, I think, although he says his dream job would be a game show host. He is a lot more private than I am though, and I would definitely describe him as “slow to warm up.”

What kind of early intervention do we have for Jonah? Is OT or PT coming out to work with him?

He is seen, in our home, by a Nutritionist and an Occupational Therapist. We get both of these services through our local CDSA. The OT comes maybe once every other month and checks on his development. He is definitely delayed by several months in his motor skills, but that is to be expected. So far, she’s mainly just observed and shown me a few things we can do to work with him, although I think as he’s get older, we’ll be able to do a few more “exercises.” We may start working with him on the feeding issues, although these will require a lot of mouth manipulation, which worries me as far as blisters are concerned. Either these exercises will have to be greatly modified or we’ll have to pray for the best, because I’m not doing anything that will cause blistering in his mouth. Then you’ve got an issue of not being able to eat, rather than just not wanting to.

What about using honey on Jonah's wounds like Sam does?

I don’t know anything about honey. I thought I might ask around about that, with other EB folks, but it’s not something I plan on trying anytime soon. I wouldn’t want to risk it. Jonah’s dermatologist doesn’t really seem to be into “alternative” treatments (just my perception… not what he’s said). I’d also like to try this stuff called Alwyn Cream which many of the EB parents swear by.

Could you do a post from Matt's perspective?

It’s really important to me that I don’t speak for Matt, so I’m going to let him do it for himself. On that note, we’re opening up this post to questions for Matt – so you can know all you’d ever care to know (that he’s actually willing to share) about the man behind the Jonut. You are welcome to ask him anything you’d like, but he reserves the right to NOT answer anything he doesn’t want to. What can I say? It’s my blog, and he’ll delete if he wants to.