Tuesday, November 15, 2011

Halloween and more

  First off I want to say that I was blown away by the response EB awareness week got! I am so impressed and so thankful to have such wonderful people in my life, such as you all, that have taken on the task of spreading awareness. From the bottom of my heart, Thank you!!!

  The EB awareness posts raised some questions in Sweden and an article was written on Daylon and his experience with the Bone Marrow transplant program at the University of Minnesota. Their hope is that if they can get Daylon's results out there, their government could consider the transplant as a worth while cause to fund and have doctors invest their time in (social health care there). There was a bit of a translation hurdle, but overal, the aricle is pretty good. Mostly,we are just so grateful and excited to be able to help any other EB family try to find hope for their child! You can find the article HERE

   As far as Daylon is concerned, life is pretty good. All of the kids have been sick recently, a couple with pneumonia and Daylon toughed it out pretty well. Don't get me wrong, he did get sick (pretty sick for most) but he stayed out of the hospital that's what we love. As luck would have it, he was antibiotics for an infection during the other kids sick time so I think that had a lot to do with it. He was fairly healthy last week and now he's coming down with a little something again the last few days. The constant corneal abrasion don't help anything, to be honest. Today when he was feeling well enough to get off my lap, he would crawl around for a minute or try to play and then crash into something since he can't see a thing. Then cry and rub his eyes, then scream cause he hurt his eyes and then sit for a couple of hours with me. It was like this over and over today. I tried stopping him from crashing, trust me... but let's just say he's a fighter in more ways than one. :)  I'm hoping that the rest he gets tonight will help to bring a happier day tomorrow
   We have a doctors appt on Wednesday and we're praying that his labs look a little better. I know it's not realistic, but I can't help but have this idea that the renal failure will just, POOF! go away. I can't even process the possibility of a kidney transplant. My mind just won't allow it. Who knows? Miracles happen everyday and Daylon has been blessed more than any one I've ever known, so maybe right? =)
   Because I missed Halloween, here are some pictures of Daylon in his costume and at the pumpkin patch (I'm throwing a couple in of the other kids too for good measure!). It was Daylon's first year trick-or-treating and our first year going as a family since he's been born!! I can't even tell you how good it felt to do some "normal" family things. It's finally cooling down out here and we've been able to go outside, heck, I can pick the kids up from school without his skin breaking down! It's fantastic! Back to Halloween, I have to say it was so adorable to hear Daylon say, "Teet-teet" (trick or treat)! He stayed on the sidewalk and couldn't care he was missing out on candy (he can't eat, so he has no idea what it is), but he loved going for a walk in his car...OUTSIDE the house!

He LOVED his pumpkin!!

We were actually able to have his foot unbandaged that week!

He stands!...he keeps his foot tilted, but HE STANDS!!

Keira the candy corn witch

Caleb as Frankenstein's monster

Violet as a jellyfish

Sadie Bug the Lady Bug