Friday, February 25, 2011

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!

22 comments:

Michelle said...

I love Sadie's cookie shirt. Do you think they'd have one in my size?? :)

Kim M said...

I'm so excited to see a Daylon post! That first picture with his sisters is so precious, love his expression! I love to pray for Daylon, watching God continue to work in his life and yours is pretty special. It is fun seeing his bare arms and wearing jeans, what a cutie!

Hope you remember his prayer warriors are out here praying for him and your family as a whole. I'll keep praying specifically that he eats better and for those kidneys to work so he can get off the dialysis!

Praying from Waterford, MI
Kim M

Jan's Blog said...

What wonderful pictures, and reports and darling pictures. I know I have no true concept of his sufferings or your struggles, but any sign of improvement is so gratifying. Prayer is such a blessing for us who root for you from afar. We love you and Daylon and the entire family of precious little ones. We thank Heavenly Father for His wonderful gifts. More prayers on the way!!! Love to you all...

Mom to Many said...

Your kids have been a helpful alert system. Like when Daylon "broke his milk." I am glad he played hard enough to be so tired. :o)

When we had our preemie boy I used to put my two oldest in the car on either side of him to make sure his color was good for the car ride. When I told the pediatrician she called them the "Pink Patrol." It sounds like you have your own "Pink Patrol."
We are all grateful for their eyes and ears to help keep Daylon safe.

I think he looks dashing with his Rock Star hair. He has such a sweet countenance.
What a lucky little boy to have such amazing siblings that love him.

You two are doing a great job!

Cheryl

Sara said...

He is such a cutie pie. I think he gets cuter by the minute. I'm glad he's having some interest in food again and I hope it keeps picking up so you can avoid the TPN. I love the crazy ways kids manage to fall asleep. The baby I was watching tonight fell asleep on her tummy, butt in the air with her hands on her hips. I kid you not, I went in to check on her and make sure she was asleep and that's how I found her.

Bella's Blessings said...

That first picture is just so AWESOME! Daylon looks content and really present! What a miracle to behold. Are we past all the bugs? Can we hang out yet? I KNOW it would do Ali good. She misses her MN friends a lot. Just let us know! We're pulling for you as always! Tim, Ang, and Ali

Amy said...

Love the pictures! He is such a handsome little guy. Glad to hear that the eating is improving. Looking forward to the next update. All of you are still in my prayers.

Amber said...

Oh my, scariest words coming out of a child's mouth and then seeing your baby not moving! But that is actually darling, when the scariness is all gone!!

Gilda said...

Awesome, to hear Daylon is eating better and I love all the pics of the kiddos. Daylon has such handsome looking eyes. And the last pics of him falling asleep were so adorable, sorry it gave you such a scare.

Smilen Champ said...

Hi
My name is Jenna and I came across your site. Daylon is an amazing brave courageous fighter and hero. U must have been a very proud mom to have all your very young and full of energy kids so quite and good. Your kids are a great bunch. I was born with a rare bone disease. My site: http://www.miraclechamp.webs.com
I love it when others sign my guestbook.

Anonymous said...

will continue to pray. remember that computer key boards are not good on the face either. fell asleep on mine, was not good.

Annalien said...

Daylon is such a cutie! Praying for continued improvement in his eating and also for his skin to heal again. (I guess better nutrition will already go a long way in making his skin better?)God bless you and your beautiful family.

Linda said...

Hi Jenn; I will continue the prayers for your precious Daylon. He looks so good. Hoping the skin starts to improve. Eating better will do the trick.
Keep the Faith. Love and Hugs Leah's Nana

Anonymous said...

You are always in our thoughts. Glad to see you back home. Praying for you guys always. You are fantastic parents!!! Steve (Elle and Chloe's dad)

Jan's Blog said...

Just a note to send love, hugs and prayers. Hope all is well, or at the very least, improving!

Anonymous said...

It is such a treat to see your beautiful family and see Daylon doing so well. The prayers are going up for him and all of you daily. It is wonderful to see Gods work with all thta Daylon has gone through.....you can't keep 'Superman' down!!!!
God bless you all and keep Daylon strong and improving every day. xoxox
Bernie Gallagher from Fontana.

Jamie said...

Hugs and prayers and kudos for the kiddos :)

Kim M said...

Checking in to let you know I'm praying for Daylon's nutrition issues and his kidneys. Also praying for your family as a whole. You guys rock! Love and prayers from Waterford, MI

Michelle said...

Happy birthday Jenn! Hope it's a good one!

Anonymous said...

Happy Birthday, Jennifer!

Much Love,
Amy

Anonymous said...

Michelle! You beat me to it! I didn't even notice until after I posted.... doh!

Anonymous said...

Hope you had a Great Birthday Jennifer. Happy Belated Birthday. Hope things are going well for Daylon and the rest of our precious little kiddos. Our thoughts and prayers are with all of you. We Love You. Give the kids a big hug and kiss for us, we miss all of you. Take Care and hope to see you real soon.

All Our Love;

Myrna & Dwight CA