Sunday, May 9, 2010

Just because I thought you'd be interested

I've been thinking about doing this post for awhile, but just haven't done it. Now seems like the right time. There's really no reason for doing it, other than I think you might be interested. I know a lot of you pray for Ella and words can't express how much we appreciate it! So I feel like you should know a bit more about what you're praying for.

Let me also say from the very start that Joe and I are extremely lucky and have very little out of pocket costs in managing Ella's disease. That said, know that this is not a post that is looking for anything...we don't need your help to pay for Ella's supplies. This is merely a post to share information that I think you might find interesting. That's it.

We receive a box like this at the beginning of every month. I put it in front of our front door so that you could get an idea of its size. See, it pretty much covers the entire width of the door. I don't know the exact dimensions, but it's big. I can't lift it. And it's too big to haul upstairs where Ella's supplies are, so we just leave it down next to the door and I carry the supplies upstairs. Then when it's empty we either give it to someone who is moving, or recycle it. The medical supply company always puts those red stars on the box...I'm not sure why, but I always know who it's from.

Here's what's inside. Yep, it's filled to the top. We're lucky because Ella only gets one of the boxes a month. There are a lot of kids that get 2, and I'm sure there are some kids that get even more than that.
When we were looking for a house, one of the big things that sold us on our place is that it has a separate area where we could do Ella's bandages. It's away from her room (we want her bedroom to be a comforting place where she doesn't have to worry about getting her boo boos done every time we're in there.) Her bandage area is the perfect little nook. Right next to the master bathroom in case we need water or to wash our hands, and right next to the biggest, best closet EVER!!! Most people would look at this closet and think about all the clothes they could pile in there. Not me, I knew instantly that it would be Ella's supply closet. That way I could keep a good stock of supplies on hand, and still have them tucked out of the way. I realize that people get uncomfortable with all the bandages being around. It's our life, so it doesn't bother us at all. But with people who aren't used to it, I don't want them coming into a house that has random medical supplies sitting out. So here's Ella's supply closet fully stocked. I love when it's fully stocked. It's the same feeling you get after going to the grocery store and you know you have all the food you need for the next few weeks. It's like snowmageddon could hit and it would be ok because you just stocked up on milk and water. That's what a full supply closet feels like.

Here are the bottom two shelves. This is mainly chux (underpads) and larger boxes. The second to bottom shelf is gauze...lots and lots of gauze. Any size you could possibly need. Roll or square...2", 4", 1" and I think we even have some 3" in there. Gauze and Tubifast.

The next two shelves are the supplies we use most often, that way if we're in the middle of a bandage change and we run out of something, I can just run to the closet and grab it. The upper of the two middle shelves also contains a lot of odds and ends that we don't use on a regular basis, but like to keep on hand. And that big pink bottle with the purple lid is sunscreen. I'm not really sure what it's doing in there.

The top two shelves are where we keep the extras. We can't store all that we'll need on the 2 main shelves, so when we start to run out we just open up one of these babies and we're back in business.
So there you have it. Our supply closet. Yes, there is a mirror on the door that was put there by the previous owners. Ella loves it and often when I'm putting things away or preparing for a bandage change, she'll look at herself in the mirror and perform for herself. Luckily she's out-grown giving herself kisses. I'll tell ya, that girl thinks she's pretty cute!

And just as another FYI, on average Ella's medical supplies cost around $5,000 a month. Yep, you read that right. They have been as high as around $8,000, and as low as just a couple thousand, but typically we're right around $5,000.

So there you have it. Now you know a bit more information about EB and Ella. People ask all the time if the bandages bother her. No. She doesn't know life without them. In fact, she won't put her feet on the floor when her legs are unwrapped. The funniest part is that after she gets her boo boos done and the gauze is still pretty tight, she walks straight-legged. She won't bend her knees for awhile, then once things loosen up she's good to go.

Any questions?

1 comment:

Anonymous said...

Wow, your closet looks "rich". Our insurance no longer pays for supplies, so we just get a little at a time.

Dana Z.