Crazy skin

Yesterday we had Mommy-Sons time since Caleb had a check up and Daylon dialysis.

First off, I need to say thank you to all of you who prayed for Daylon's appetite to improve and for the kids and I as we all headed off to dialysis together on Monday. The kids were absolute angels! I couldn't be prouder of them. They sat from 12pm until 5 pm, in their chairs and were so quiet and respectful of all the sick kids in the room. Like I said, I'm so proud! The nurses were so impressed that they gave each of the kids their own can of playdough. Nice, huh!

  Over the past three days, Daylon's desire to eat has picked up. Yesterday, he drank 20 oz! I know it's still not very much, but at least we're seeing some improvement. :) I'm praying that he's intake will continue to climb everyday and he'll soon be eating enough to sustain himself. The doctors have decided to give him two weeks to improve to a healthy status, but if we don't see enough improvement then they'll start giving him TPN during dialysis to force some calories into him. Please keep the prayers coming!

 
  Daylon has had insane Kramer hair the last several week, as you may have noticed. Everywhere we go, people comment on his quote, "Rock star hair". LOL! Yeah. That's not intentional! :) His scalp has been cracked and dry. It looks like the dry desert floor. Anyway, it obviously itches really badly, so he scratches his head and rips up the skin. He has a bunch of random bald spots and scabs as the end result. Because his scalp is either scaled or scabbed all over his head, his hair stands up on end. With Daylon's skin, the area around the breakdown is always extremely fragile and so it's really easy for the breakdown parameter to spread and spread. Just since my last post, the parameter has spread from his forehead, down his face. His upper chest has started to blister and tear too. His chest hasn't looked like this since before transplant, so that's a bummer. It's become a lot more difficult for me to get Daylon not to rub or scratch his sore skin. When this would happen pre-transplant, I would bundle him up in a blanket and hold him almost constantly for a few days to get his face to try to scab up but at 19 months, he's a lot harder to contain. It's all about being creative when it comes to parenting an EB kid since everything is off the books.

 
  Outside of that, things have been going well. Daylon has been happier and smilier than he has been since his surgery, so that's always a treat for us.
 Oh! Kind of funny story:
 I put Daylon in his bouncer so I could sweep up the kitchen floor after breakfast. Five minutes later, Caleb came running in saying, "Mom! Something is wrong with Daylon! I think he's dead. Come see!" My heart fell to my feet and when I ran in I found this:

No worries. He was just that tired. It's rough playing . :) Sleeping with his forehead on little piano keys didn't help the blistering!
  Hope you're all doing well. We're so grateful to have so many wonderful people rooting Daylon on in his journey.

Yesterday we got to see Dr. Blumberg his Pediatrician and Brooke his nurse. They have been such a HUGE part of our support group for Daylon and have helped us fight to get some many things covered by our insurance. We love them!