Tuesday, March 1, 2011

A New EB Family

This will be the last post about our trip south. There was just too much fun to put in one post. This post will also be strategically vague because I’m not sure what I can post and I don’t want to get anyone in trouble.

There is a little boy with RDEB (the same type of EB Ella has) and he has spent the first year of his life in a foreign hospital. I’m not allowed to say the country, so you’ll have to just know that it’s not here in the US. His story in a nutshell is that he was born with EB and was left at the hospital by his birth parents (I wish I could tell you this is uncommon but unfortunately I know of 2 other EB kids who had the same thing happen). Due to his EB he has been kept in the hospital instead of being transferred to an orphanage, like most kids would have been. In this situation this is a HUGE blessing because at least at the hospital he’s getting some care. If he were in an orphanage he would get little, if any, care for his EB. He’s 1 year old and has spent his entire life laying in a hospital bed. Heartbreaking.

Now to the good stuff, there is a family, the Delgado’s, who desperately wants to adopt him. This couple has been through heartache of their own when they lost their beautiful twin daughters who were conjoined, yet they feel called to bring this precious little boy into their lives. They have started the adoption process and are anxious to have this sweet baby placed with them. As with any adoption, there are complications that could arise that prevent this family from getting this child, so the entire EB community is praying for them.

All that said, this awesome family lives in Texas about an hour from my aunt and uncle. I didn’t even know they lived in Texas, but when Ella and I were heading down south God really laid them on my heart. Something in my gut just told me that they lived nearby and that I needed to contact them. So I randomly sent Vanessa a facebook message asking where they lived. Fast forward to Tuesday afternoon, Vanessa, Jason and their daughter, Kenya (they also have a son but left him with a baby sitter) came to my aunt and uncles house to meet Ella and me. We had a great time talking. I told them a bit about Ella and her birth story. I even pulled out the bandage suitcase (yes, when we travel we have one entire suitcase devoted to Ella’s bandage supplies) and told them about all the stuff we use. They asked questions and soaked all of the information in (sort of like drinking from a fire hose). I was so glad to meet with them and pray continually that they get to bring this precious boy home. He needs a loving family and I know they would be great.

You can learn more about the Delgado family on their blog and you can learn about their adoption process here. Please keep them in prayer as they enter this exciting and uncertain time.

I would also like to ask you all for a very specific prayer request. Ella is doing great with potty training and overall her skin looks really good. Unfortunately since she lost the padding and protection of the diaper, her bottom is really in rough shape. It’s such a difficult area to cover, so I end up just sticking her bandages all over and hope for the best. Please pray for 2 things: 1) that Ella’s bottom will heal quickly and the skin will strengthen and not have so many open wounds (this sounds weird considering EB is all about fragile skin), and 2) that I will have the wisdom to know how best to treat it. My mind is racing to come up with some incredible contraption to keep things in place, so I pray that God will reveal to me the perfect way to heal this spot. He’s done it with other areas and I’m confident He’ll do it again. I’m also going to email around to other EB moms because they are all geniuses when it comes to this kind of thing. All that said, please pray for Ella’s little bottom. Thanks so much.

1 comment:

Anonymous said...

You can purchase thick training pants at Babies R Us.
I know that she is trained but they are soft and offer additional padding.