Sorry for the late post tonight. It's been one of those days where I've been constantly busy, but then look back and wonder what in the world I've accomplished for the day.
I'll answer a couple questions tonight, but will probably make this short (I always say that and they end up being the longest posts), so I can catch up on my LOST.
Matt said I should answer some of these in one sentence. I asked him if I had EVER been one to answer anything in one sentence. The answer is no, my friends. I can claim to be a lot of things, but concise is not one of them.
Most important question first: When you go to Target and you have Band-Aids, socks, stationery and apples on your list, what ELSE do you leave with?
Good question. And I saved my Target receipt from today so I could answer accurately. On my list today: drinking glasses, cooler (thinner) receiving blankets, kitty litter, deodorant, gallon size Ziploc bags. What I actually bought: 2 sets of receiving blankets (go big or go home), a set of soft burp cloths, Utz Honey Barbecue Chips, deodorant, drinking glasses, gallon size Ziploc bags, and a $3.00 whale shorts and shirt outfit (that he may be able to wear???) for Jonah. I did NOT, however, get cat litter after struggling royally to wrestle the 28 pound box to the bottom of my cart (is 28 lbs heavy or am I just really weak?) to later call Matt about what kind of deodorant he wanted, for him to then report that he had already picked litter up on his lunch break. Note to Matt: Don't put stuff on the master list if it is also on your mental lunch break list. That is in violation of statute 422, line 7, page 64 in the "Being my husband" handbook. So then I had to wrestle it back on the shelf. (Let me also add that I had put entirely too much thought into which kind of litter to buy in the first place - taking into account price, quantity, level of fragrance, clumping ability etc. and so on and so forth - go big or go home, people).
Question: What about the bone marrow transplants being done at the University of Minnesota?
I have only seen a couple things on this, and from what I understand this treatment is being done on patients with Recessive Dystrophic EB only. Also, they are only accepting children who have a sibling who is an exact match to the trial. So that's two against Jonah. I don't know if this would be a cure for Junctional too or if it would only work for RDEB kids. All you RDEB peeps out there, clarification? I am very excited about this trial - I think it's 4 for 4 with awesome success - even if it is a cure for RDEB only. If only there were more money and more awareness... let's get this train a movin'. These kids need help. I have heard about some skin grafting being done with some success on EB patients and need to look into this (but haven't yet).
Question: Why do we keep Jonah bandaged? Is it because he has wounds or just for protection?
Both. (HA! You thought this was going to be a one word answer... sucka!) We mostly have him wrapped for protection reasons, although he does have spot blisters. Right now, he has breakdown on his face, ears, upper left arm, bottom, upper right thigh, and left ankle. His ankle and bottom are his worst spots. Every where else is soft, clear, beautiful, seemingly healthy skin, but would blister at the slightest friction or pressure if unwrapped.
Question: How will having his hands wrapped affect his development?
If we were to leave his hands wrapped, he would not be able to develop his fine motor skills. Therefore, it is our plan to start leaving his hands unwrapped within the next few weeks. I'm very scared about this, and it is a definite prayer request. His hands will blister (as we saw when we tried to put the mitten on him), but we'll just have to drain and keep on going. He has to be able to touch and feel and hold and explore with his fingers. But it will be painful for him and blisters are inevitable. And it makes me sick to think about it. But we have no choice. At some point, you just have to accept the sucky parts and move on.
Question: Do we have air condition?
Yes. (Woo-hoo! Look at me. One word. Except for these subsequent ones.)
That's it for Q & A for now, but I'm enjoying the questions. Please feel free to re-post a question if you've posted it at a different time, and I haven't answered it.
- the Praise Baby CDs a wonderful blog reader sent. Jonah really likes them, and so do we. Thank you!
- the Target gift cards and one hour massage I received from blog readers for Mother's Day. You guys are too sweet!
- the FREE freezer that was DELIVERED TO ME by a sweet, sweet blog reader. Thanks, Trish.
- the plethora of milk storage bags I now have.
- the 1,000 Japanese cranes the Japanese class from South Central (where I used to teach) sent me. In Japanese culture, you try to fold 1,000 cranes to make a wish come true. And those sweet high school students spent two days folding cranes and wishing for Jonah. They also raised money for us. High school students. Teenagers. Amazing people.
- And finally, the fact that I received packages from MckMama AND Kelly today. WHAT? If only Angie had sent me a package, it would have been the ultimate blogging trifecta. Hey, two of three ain't half bad.
And now, I must go. I'm trying to watch LOST and type, and well, I'm completely lost. What year is it? Where are they? Who's that? Who is his daddy? Why are people coming up out of the water? Whose side is Sawyer on anyway? I'm so confused.
And next time I say it's going to be short, I'm for serious.