answers, part 2

What are our specific needs at this point?

Ugh... I hate answering this question, although it touches my heart so much that you'd be willing to ask it. I'd say we are stable as of now financially although that has so much to do with you and your generous donations and magnet buying. Magnets are still for sale (see my sidebar) and Pinedale Christian Church in Winston-Salem still has an account set up for us too. Just put Jonah's name in the for line. Jonah's supplies are mostly covered by insurance although there are months we still get a $600 -$700 bill for them. (They cost anywhere from three to seven thousand each month before insurance.) As far as supplies we have to buy over the counter, we always need Aquaphor, alcohol swabs, Chux (blue waterproof) pads, and Polysporin. Thanks for asking, but please know that we don't EXPECT anything. Oh yeah, now would be a good time to say that I've used many of the Similac coupons you've sent, but I think we're good to go for now. Partly I can't use them fast enough and some of them are expiring before I can use them and partly I'm buying formula on Ebay a lot (which I would recommend). If I can find an auction with free shipping, I can typically get his Alimentum for $12-15 a can rather than $25 ($20 with a coupon) at the store. Just a nifty little tip for ya!

How are Jonah's hands doing now that they are completely unwrapped? Can he pick up and play with toys without hurting himself?

See for yourself.

So in a way, not so good. But it could be so much worse. The very first time I tried unwrapping his hands (soon after we came home from the hospital), they swelled up completely and blisters encased many of his fingers. So we are thankful for this! They have new blisters every day. Sometimes we have a great day where I only have to drain one or two little ones, and sometimes it's really bad and I have to drain ten to twelve blisters... some of them being the big, angry blood blisters.

He can grab (still working on this one) and play with toys, but we try to keep them on the soft side. He has just started shaking things and patting things within the last couple weeks, so we are excited to see that. He is still unable to hold heavy things. I may or may not have let him attempt to hold my cell phone. It may or may not have dropped on his face. I couldn't rightly say.

I don't see a direct connection between holding/playing with toys and increased blistering. I think he does most of it by rubbing his hands together, rubbing his hands on us and things around him, and chewing on his fingers.

Will Jonah's limbs and body always have to be bandaged even as he gets older?

We are not sure, but unless something changes he will have to bandaged his whole life. Maybe he'll get a little tougher as he grows, but there is no way to know. Every case of EB is different. The non-lethal form of Junctional (which we think he has) is labeled a "moderate" type of EB, but Jonah, at this point, seems to lean toward a more severe moderate. Any part of him that's not bandaged blisters. And his feet chronically blister despite being wrapped. We'll just have to wait and see. But we are praying for a miracle and have faith that one is coming!

What is the one thing I'd want people to know about Jonah's EB?

I guess I wish people knew what it was without me having to explain it. But if I can't have that, I just wish they knew that 1) we didn't hurt him and 2) he's not contagious. I think that would cut down on a lot of the dirty looks. And even though they make me mad, I worry more for him as he gets older and starts noticing the staring himself.

What is the one thing I want people to know about Jonah that has nothing to do with his EB?

Man, I could write a book on this one. I guess I want them to see him for who he is. He has such a sweet, content personality, and he is soooo funny. His laugh is THE SWEETEST THING on the planet. I often laugh so hard at him laughing I can't continue doing what was making him laugh in the first place.

Do we plan to have more kids and how does the EB gene affect that?

We do plan on having more kids (as much as you can "plan" something like that), although we do not plan on having any other kids that are genetically ours. JEB is a recessive disorder, so Matt and I are both carriers. That means there is only a 25% chance that any child we have will have EB. However, we are two for two, and unless God has a different plan, we won't risk it. EB can be isolated only after an egg is fertilized and since we feel the baby is already alive at that point, "crafting" an EB-free baby is not really an option for us. We are considering both embryo adoption and traditional adoption. I'm leaning more toward embryo adoption (where IVF couples are finished having kids and donate their remaining frozen embryos to adopting couples... I would be able to carry, deliver, and breastfeed the baby). With traditional adoption, I am so scared that the birth mom or dad would change their minds. I would rather experience the heartache of the embryo transfer not "taking" over bringing a baby home, only to have him/her taken away. I don't know. We have a lot of praying and thinking to do. I'm ready to start that thinking now (just in case whatever process we choose takes a long time), but I don't think Matt's quite there yet. (He's still rejoicing that he finally has his not-pregnant - therefore a little more sane - wife to hang out with for a while. :) ) The only fear I have with embryo adoption is that typically they would implant two to three embryos (I think there's only a 30% chance that ONE of the embryos would result in pregnancy), which means there's always the possibility of multiples. Don't get me wrong, if we end up pregnant with twins someday, I will count my (double) blessings and be totally pumped about it, but imagining (right now) having an EB toddler and twins makes me want to pass out a little bit.

What do we do for Jonah throughout the day? How is his general care modified for EB?

I get Jonah up in the morning and immediately change his diaper and lance any blisters on his hands and face that have popped up or refilled overnight. Then, I let him play in his high chair while I eat breakfast, check email, read blogs etc. I then attempt to feed him some oatmeal with fruit or yogurt with oatmeal which he mostly refuses. I then get his bottles ready and spend from about 9-10:00 feeding him and watching Regis and Kelly. My help arrives around 10, and we try to start dressing change by 10:30. Bath and dressing change take about two hours (depending on how many new blisters he has on his feet), and then I feed him again afterwards. Then I try to get him down for a nap, but typically he'll only sleep for twenty minutes or so. After he wakes up we play and hang out until he starts acting tired again. So I try to take advantage of the sleepy time to work in another bottle (he's still only eating if he's asleep), and then try for a nap again. Sometimes it works. Sometimes it doesn't. Matt usually gets home around 5, we eat dinner, attempt feeding Jonah solids again, set up for tomorrow's dressing change, and hang out with Baby J until we start the bedtime routine around 7:30 or 8. We fix his bottles (which always have different meds in them), change his diaper, and lance any new blisters on his hands and face that have popped up since dressing change. We Aquaphor his face and hands before bed. We feed Jonah and read The Chronicles of Narnia until he finishes his bottle. He's asleep by then and we put him in bed.

We can pretty much do everything normally but just more gently. He obviously can't wear disposable diapers, so we mostly use FuzziBunz (exciting diaper news coming soon!). I have to put a disposable with the elastic cut off inside the cloth diaper, since my cloth are no longer absorbent. Aquaphor + Cloth Diapering = DISASTER! Now I'm using Northern Essence Diaper Salve which is supposedly safe for cloth diapers, but it's too late. They're toast. I can use wet wipes on his bum and face as long as they are plenty wet and I don't rub. It's more of a gentle wiping off than a rub. Then I lather his bum up with the diaper salve (every time) and diaper him up. We have to be careful picking him up. You have to scoop him up with one hand under his back and the other under his bum. Picking him up under his arms will cause friction under his armpits. When he spits up, we blot instead of wipe. We put Aquaphor on his bottle nipples to help reduce friction in his mouth.

Can we hug and snuggle him as much as we want? Can his skin handle hugging and rubbing through the bandages?

Besides his feet, his skin is fairly durable if bandaged. So yes, I hug and kiss all over him all the time. I do rub his back although I'm not sure if he can even feel it. Basically it's the picking up thing that's different... and just making sure you move him carefully when changing positions (lying back in my arms to on my shoulder), to make sure you don't rub his skin at all.

I'm still working on the rest of your questions and will get the final installment up in the next couple days. Thanks for caring enough to ask!

Hope you are having a great Friday.