Wednesday, April 25, 2012


Hey y'all, sorry I haven't gotten to write the Frequently Asked Questions post until now. I am going to answer a few questions a week until I am all caught up. If you have more questions feel free to post them and hopefully I will be able to answer them soon.

What is Epidermolysis Bullosa (EB) and will Anton get better now that he is in America? 

EB is a very rare genetic skin disorder where basically the first layer of Anton's skin is not attached AT ALL to the second layer. Friction can cause blisters and a lot of friction can cause his skin to literally come off. We can kiss and hug him (apply pressure) but we can't rub his skin back and forth (friction). We have to be careful when we pick him up so we don't move his skin or it will come off. For a more detailed explanation of EB go HERE!

There is currently no cure for EB so as of right now Anton will not get better unless God heals him. In the month he has been home we have already seen his skin go from being really bad and full of HUGE wounds to almost clear to pretty bad again. The hospital that Anton was at for the last 16 months of his life took amazing care of him with the resources they had but we just have more research in America and better medical supplies to help heal his wounds. So yes he will most likely do better in America but at the same time he will always have EB so he will always get wounds.

Megan wanted to know about the day to day care of Anton's skin.
Once Anton wakes up in the morning the first thing I do is change his diaper. I look for new blisters around his diaper area and if he doesn't have any then I use some cream that is safe for cloth diapers and rub it all over the skin that his diaper will touch. The reason I do this is to keep the diaper from rubbing on his dry skin which would cause blisters. If he has a blister then I have to pop it and drain all the liquid out of it otherwise it would just keep growing since his skin is not anchored down. After I pop and drain it I put Polysporin over his wound to help prevent infection and I put a patch of transfer over the wound. If I think his skin is going to tear I put the Polysporin on the transfer patch so I'm not rubbing his skin. I also check for blisters around his arm pits and his neck. After that we snuggle then he is happy to sit on the floor and play with Kenya and Judah. I try to keep Aquaphor on his hands which helps him not get as many blisters. We are also putting cream on his cheeks to try to clear up the red circles he has on them. His dermatologist thinks that is Eczema and not EB related, so we shall see. That's pretty much all I do for his skin during the day. We do his dressing changes on Monday, Wednesday, Friday and Saturdays (he used to just get two a week.) I will post a blog about dressing change at some point but not today :)

Kim wanted to know how we bathe him without hurting his skin?
If we give him a bath in the tub we leave his transfer on while I am carrying him to the tub. Transfer is the bandage that his whole body is covered in. Then once I get him in the tub we take off the transfer from one limb at a time. I can rub his skin as long as my hands are lubricated. So I put tons of liquid soap on my hands and rub his skin (which is lubricated from the bath water). If he has an open wound I just pat that area. Then rinse off the soap with water. I was lifting him out of the water without anything on his skin but I barely moved my fingers across his legs and rubbed some of his skin off so I don't do that anymore. To get him out of the tub I get a piece of clean transfer, get it wet, then put it on his back and put another on one of his leg so I have something to hold onto when I get him out of the tub. I put my arm behind his back and tell him to lean back, which he does, then I put my arm under his legs and hold onto the transfer that is on his leg. I slowly lift him out of the tub and hand him to the person who is helping me. They hold open a soft blanket and that's what I put him on then I take him from that person and put him on his changing table.

Matt Williams wanted to know if I filled out a March Madness Bracket yet?
Matt I am sorry to say I never did fill out my bracket, in fact the only time I have ever filled one out is when I stayed with you and Patrice... I know, I am a bad person... :D

I will try to do a FAQ post again next Wednesday and maybe every Wednesday until I have answered all of your questions.

And here is a picture of Anton cause I know that's what you really wanted to see :)

On a totally random side note will you please be praying for my cousin Josh. He was in a really bad car accident and he is not doing well at all. He broke most of the bones in his face and lost one of his eyes. He is in the ICU and they are just waiting for him to get a little stronger before they try and do any surgery's. He is only a few years younger than me and I am very worried about him.

Okay that is all. I hope y'all have a great week!


Anonymous said...

Praying for your cousin, Vanessa. Please keep us posted. Lilia B

Elizabeth said...

You are doing an amazing job with Anton...I'm really enjoying seeing his big smile. You leave me feeling very inspired.

Prayers for your cousin!

Anonymous said...

Will Anton have surgery to separate his fingers? Praying for your cousin!!!


Anonymous said...

Dear Vanessa, will definitely pray for Josh. Very disappointed to hear about his car accident :(( I hope he will get stronger very very soon!
Thank you for your post and all information about Antoshka's day-to-day life.
You are the best mother in the world :))
Many kisses to you all,

Anonymous said...

Dear, I also have a few questions. 1) About Antoshka's hands. Are his fingers in any way deformed?
2) Do you believe there will be a day when he will not have to wear the transfer?
3) What's wrong with his nose?
Thank you very much for your answers!
Always yours,

Liz said...

Thanks for answering all the questions! It really helps to understand what exactly you have to do to take care of Anton. I just noticed in the picture you posted...are his fingers fused? Clearly it's not slowing him down any!

I will keep Josh in my prayers.

Anonymous said...

Any updates about Josh? Praying for him...