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.