Monday, August 16, 2010

day +53

Our Superstar!

The sun is shinning, the breeze is blowing, and things are looking up in room 403! It's a good day. Daylon is impressing everyone with his determination to prove every doctor wrong. I love that.

Dialysis has become Daylon's only obstacle in the last few days. His dry weight (normal weight) was 11.6kg and they've not been able to get him lower than 13kg. The problem is, everyday, they try. The daily goal of a kg is a lot for a little body, especially when there's not a ton left to give. His blood pressure ends up tanking and they're forced to pull off early. Afterwards, his soft spot is sunken disgustingly deep, his heart rate is up in the 180s and he's ridiculously weak. We've had several chats with the doctors over the last 72 hours, and they've decided to try to maintain a 13.4kg weight! I'm so excited to see what Daylon will be like after dialysis today! I'm hoping that he'll have a similar amount of energy that he did this morning.

This is a florescent picture of Dr. Tolar's skin (right) and Daylon's skin before transplant (left).The red line is the junction where the epidermis and the dermis meet. That's where the Laminin Beta 3 is. As you can see on Daylon's skin, he had very little. Typically there is none, but his body was attempting to correct the deficiency. In the words of Dr. Tolar, "There was some, but not enough to help". Ok, so, no Lamin Beta 3 = Junctional Herlitz EB. We should be getting back the 28 day Laminin results soon, which will show if the transplant is actually working.

In the middle of the night on Saturday, I was able to get him to hold his head up for about a minute or so. Admittedly, he looked like a bobble head, but hey, he did it! The best way to describe his motor skills right now, is to say he's like a gigantic newborn. It is soooo difficult to handle him. He's 35 inches floppy dead weight...with fragile skin. Getting him out of bed is a toughie, but once we hold him...man, it's the best! He just snuggles into you and falls asleep. Last night after an AMAZING bandage change (this kid's skin is awesome right now!) we attempted to put a onesie on him to try to prevent him from being able to grab at his g-tube. Ha! That was fun! We were barely able to snap the middle clasp, but it worked! I can't get over how he's grown. He's definitely our tallest kid so far. Keira has always been a taller kid, but she was 3 feet at 18 months. He's an inch shy of 3 feet at barely 13 months.

A rare peek at Daylon's exposed face

The exciting thing, so far for the day is big arm movement in his right arm. Daylon started all the therapies (speech, occupational, and physical) 3 days ago. All of it has taken place while he is still lying in bed, but I think he is getting stronger. Doctor Tolar is really excited about all the improvements regarding his neurological issue. Daylon is tracking with his eyes, making some sound (last night it was a decent volume and looked like an attempt to talk!!), and moving. These all things that they doubted he would be able to do.

We're looking to move back to 5D on Wednesday. He just needs to calm down during dialysis.

My sister-in-law, Jessica a.k.a. Jess, flew in today and will be here until Friday. We're so excited to have her visit! The kids vs. adults in almost 1:1 right now, which is wonderful!

Well, it's back to the baby, for me. Thank you all for walking with us in our journey! We love you!

These photos are of Dr. Tolar's skin (left) and Daylon's skin pre-transplant (right). This is showing Collagen 17 = Junctional non-Herlitz EB. As you can see, the red lines are about the same.





For those of you interested, here are the pictures from Brian's birthday that evening with our family.


























18 comments:

Paula71 said...

I am thrilled to see Daylon looking so good. They should be preparing for him on 5D. I was a bit curious to see if maybe they have his dry weight miscalculated. He has grown in the time he has been there. I hope this adjustment in dry weight helps. Still Praying

Amy F. P. said...

What wonderful news! Daylon is looking so good. It's so exciting to see the pictures and the amazing improvement he is making. Thanks for sharing your miracle with us.

Anonymous said...

Oh this is so wonderful to read!! Daylon is a fighter and determined to beat the odds! I have a son really close to Daylon's age. I think that Daylon is only about 3 weeks older! Just reading your blog and seeing all the improvements in Daylon make my heart soar for you and your family!! Our thoughts and prayers are with you as always, and I know there are thousands if not millions of prayers going up for your family every day! Stay strong and bask in every moment you can with Daylon! He is such a beautiful little boy!

Skye is the Limit! said...

BEAUTIFUL EYES!!

Anonymous said...

Love the hat and glasses. Just the thing for a little man on the move. Praising God for the good moves being made by Daylon. sg-KS

Emily said...

Thanks so much for the post! I check in on little Daylon every night, and I was hoping for good news =). I love hearing how he blows the doctors mind by doing things they thought he couldn't do!! Yay Daylon!! I love children with special needs and work at a small non-profit teaching kids with severe disabilities. Your story is amazing one of inspiration and hope. Thank you for sharing it with the world.

Patrice said...

He is looking so GREAT! I'm so happy that you guys are having mostly upward days, and that he's had so much movement and sound. He's such a fighter. Proud of you, Daylon! Keep fighting! Love you guys. Thank you for being so strong.

Lucy and Ethel said...

What exciting news, and Daylon's skin looks AMAZING!!!

Just being able to hold him again must be heaven :)


'Lucy'

BRIAN AND BROOKE said...

Just more wonderful news and blessings coming your way! Daylon is such a miracle !!! We are all so proud of him!! I am really just so happy...really !!!!!!!!! His skin is looking so FABULOUS!!! Enjoy your snuggle time with Daylon.... you have a lot of time to catch up on! Hugs from Brooke in Cali :)

The McLaughlins said...

WOW...Daylons skin looks fabulous. That is such an adorable picture. I love getting to see his his cute little face. He's really just so darn handsome Jen. This latest post just makes me so happy. It's really made my day. I'm so glad to read that he is improving so quickly. He really is incredible. I will continue to pray for his full recovery. Miracles happen every day. Stay strong.

Take Care,
Amber McLaughlin,CA

Annalien said...

It is wonderful that Daylon is improving so well! The skin on his face looks amazing. Praying for continued healing.

Thank you for the photos. Your children are gorgeous.

Elle's family said...

Looking sooo good. I am so happy we got to finally meet him! Keep up the good work Baby Boy Daylon!

Mom to Many said...

Good news! I am so glad to see things are going so well!

Aviles Family said...

I'm no professional, like at all, but his skin seems to look amazing! His face is so clear! YAY!

theartfulgardener said...

Daylon's face looks great. I am so happy that he is trying to do more things now that he is awake and that you can comfort him by holing him now is awesome! Lots of love and prayers, Laura V. Germany

Gretchen said...

OMG, he is a superhero!!! Wow, we are so so happy that he here and doing well and that he has such a superb family. This is just such joyous news!!

Jan's Blog said...

I've been ill, in hospital, and just finally stopped in to see how things were going and OMGoodness, he looks wonderful. What a delightful surprise to actually see him. But what's the big surprise I guess... with all the love and prayers for this little child how could it be otherwise. Still sending prayers!!

Kristy said...

Love, love, love that super cool cat pic!!! :) So glad he is doing so well!!!! Praying that each day continues to get better and better and he keeps blowing all the doc's minds!