Wednesday, November 18, 2009

Meet Elly!

The other day I got a Facebook friend request from Elly's Mom Emelie.  They live in Sweden and Elly is almost 9 months old and has JEB just like Leah, Jonah and Tripp.  Isn't she just the cutest thing?! 










I guess she is my little Miss Turnquist's long lost Scandinavian cousin. : )




I received a comment/question on the blog this morning and I accidentally rejected the comment instead of publishing it. Once a comment is rejected it cannot be retrieved.


The question concerned the lack of dressings that we put on Leah - and wouldn't it be better to wrap her for a more complete-coverage type of look.


Whoever (they commented as Anonymous) wrote the comment said they didn't want to come off as rude; and I admit I was taken aback for a second, but I realize any question is a chance to educate on EB and I'm all for that.

Well, as you know, every baby is different; and every EB baby is different. Blisters can be caused from friction, pressure, or heat.  We have found through trial and error, that Leah is susceptible to more frequent and severe blisters if she is overheated.


Heat seems to be worse than general friction for her. Right now her upper arms are not covered, and she's also been rubbing her arms against her blanket a lot when she plays. She has given herself 0 blisters on her arms by rubbing them like that. However, if I wrapped them, she'd most likely blister from the heat AND the extra friction being created by her rubbing her wrapped arms against her blanket.

In early July (hot as heck time), right before Leah turned 6 months old, she was completely blister free. She was also not wearing any dressings other than a thin wrapping over her legs to protect them while she kicked her blankies. I kept her in a diaper and a blanket to keep her cool.

Then we had our month and half long in-and-out of the hospital time and of course, she came home banged up.

There have been times we've had to thickly bandage Leah for various reasons, and when the dressings come off it always seemed as though we'd done more harm than good by bandaging her so thickly.

Dressings for an EB baby aren't just gauze. It's usually a layer of some kind of cream or ointment, then some kind of non-adhesive dressing (which come in a variety of thickness) then a few wrappings of gauze, and then a retaining dressing like Tubifast over that. When all is said and done it's like wearing a thick sock over your skin. Thick socks = warmth. And warmth for Leah is a bad thing. After all, like Elly, she's got Scandinavian blood. ; )

5 comments:

Jen Burns said...

I think it is awesome how you responded to that question!

Janel Waters said...

I LOVE that answer. I also don't generally bandage. I have a couple areas where I will put Mepilex lite, but for the most part, I prefer nothing - the bandages rub also! If I can get away with it, I wear no bandages and my husbands boxers and t-shirts. Heat is HORRIBLE!!!

You do what works, and what works is rarely the same for each EB person.

Elly is ADORABLE!!! How CUTE is she!!!! So glad that you guys hooked up! Facebook is an amazing thing.

Hope all is well with precious Leah, keeping you in my prayers.

Janel

Patrice said...

Oh my goodness. That little one is a doll baby. Love your answer. Great way to handle that. Your strength always blows me away. You go on with your bad self!

Love ya,
Patrice

Patrice said...

Hey Meg,

Just wanted to let you know (maybe you already do) that the Creamy Desitin is only 10% Zinc Oxide and the regular is 40%. That's why I have to get the smelly stuff. Grr. Anyway, you don't have to publish this, just wanted to make sure you knew that. The Creamy probably works well for Leah, but Jonah's take so long to heal I like using the higher power stuff. :)

Hope you're well and Leah's eye is doing better.

Love ya,
Patrice

Linda said...

Great way to respond about the dressings. Every EB baby is different and you do what is best for Leah. Elly is adorable. Gotta be related.
Give Leah a big kiss for me. Love you guys!!!! Love Mom

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