Day +106

  I wanted to start out this post, by mentioning Bella and Elle. Both girls are having a rough time in the PICU and can use all the extra support you can give them. If you have an extra couple minutes please visit their blogs and drop them a note of encouragement. Click on their names above or off to the right of the page under "Daylon's EB Friends". Thank you!
 

  
Daylon has had a pretty good couple of days, especially yesterday. Last night I had so much fun with him. He was laughing and smiling and yelling at anyone who would walk by and ignore him. Seeing him act so much like his old self was such a relief for my heart. Okay, so cute story, I've been working on teaching my older four kids solfege and pitch (I know, we're fun to have as neighbors). I will play a note and then sing the note and then they go. They're getting pretty good actually and they all love using their voices and well, being loud. Well, one night Brian was downstairs grabbing our dinner and I was sitting at the table with the five kids. They were getting restless, so I decided to play our little game. I hit the side of my glass cup with my spoon and sang the note and the four kids followed suite. I did it a second time and complimented the each kid as they all held the note. Out of no where and completely off pitch, Daylon starts singing too! We all stopped and had a good laugh! when we tried again, Daylon joined in and wavered around until he found where we were at (vocally). He was so proud of himself and the funny thing is, the other four were even prouder. They kept saying, "He did it! He did it!" Ah, I love that kid!

Daylon being cute with Mommy needing make up...and sleep by the looks of those bags!

   Physical therapy has really been wanting us to push his sitting, but it seemed to make him so unhappy. Now, I know that physical therapy is rough stuff and no one wants to do it, but he would yell out like he was in pain and when he would tolerate it without crying, he was SO SERIOUS. I've been emailing back and forth with Dr. Tolar and he thinks that the extra fluid in his head is causing him a sort of headache when he sits up. He said that he thinks it's most important that we listen to Daylon and his body and only push him, as much as he seems comfortable. Having a bit of a clue as to Daylon's unhappiness is very comforting. I was also happy to hear from CrsLeigh that their baby is acting the same way, without BMT! Sometimes I get so caught up with his various illnesses that I forget he's a 15th month old kid (TODAY!) that will have typical 15 month old stages! :) Thank you all for your comments!



What? I don't have your phone! :)

   Yesterday's blood work showed that Daylon's CSA level is still low, so they upped the dose again. Boo! No, I'm kidding. :) They want his level higher since they don't know if he has GVHD. It's just a bummer, because I would really like to give his kidneys a fighting chance and that's not happening until they lower the dose.  He's still peeing though, so I'll take it!

That's the top of a blister peeling off his tongue

Ouch

   Tummy issues are still, well, an issue. He's on 25ml an hour as we speak (less than an ounce an hour), so his nutritional goals are behind further today. He's so gaggy and pukey the last couple weeks that he can't keep much down. The BMT docs want him to eat 1/4 a container of baby food a day or a few bites of something to help his tummy practice. Ha. ha. ha. Yeah, it's just become an invitation to throw up. He LOVED this chicken and wild rice soup we had for dinner the other night, but I had to cut him off after 4 slurps. Within 5 minutes, Brian and I were out of our chairs, dashing around for towels and wipes.  Speaking of getting sick, Caleb woke up this morning with a HORRIBLE flu bug. He's been sick at least 10 times since 7 am this morning and it's noon. Daylon can not afford to get the flu (which is why we all had our flu shots. Glad they're working. :) ), so we have to be super careful right now that Caleb's germ don't come near Daylon. Things haven't been on Daylon's side all week, since Sadie's croupe started acting up Sunday night (she's fine now).

Caleb this morning napping on the floor and the air fliter behind him, getting rid of the germs

   So we have big news! On Tuesday, we gave Daylon's left leg a test run without bandages. I cut the legs off of some super thick sweat pants (they were 2T and being sent back home anyway) for Daylon to use during dialysis to protect his legs from the blood pressure cuffs. After two days and NO BLISTERS!! we decided to have his right leg participate in the fun!
      Presenting, the new, improved, Daylon!

Brian wearing the cuffs for Daylon to use during dialysis

    His feet are improving too, but still a couple months from being healed. The tops of his feet and toes are completely healed! Woo-hoo! The pseudomonas infection on his right foot is pretty persistent and well, ugly. I would guess he has skin on maybe 15-20% of his right foot and close to 50% on his left!! Several of his toes have fused to the pad of his foot, but we can always fix that later on with surgery. Just this week, we did notice some more fusing. This time it's where his groin and his thigh meet on his left side. When he was a couple days old he had one of the Hepatitis shots in the hospital and they put a little circle band aide on his thigh. The next day, the nurse pulled the band-aide off...and his skin. That's when the doctors there finally believed me that something was wrong with him and his Pediatrician, Dr. Blumberg was called in (he was recovering from surgery). Anyway, that sore took months and months to heal and left a lot of granulation tissue. As Daylon grew, the scarring moved from mid thigh to the bend in his upper thigh. Twice, while he was in the PICU and had a 5C nurses on the late night shift, the nurses mistook the granulation tissue for blisters and attempted to lance them. The area ended up sore, bloody and completely open again. It's almost entirely healed now, but the area has fused causing a restriction in motion for his left leg. Supposedly, rarely do JEB kids have issues with fusing, but unfortunately Daylon is one of those kids. We are blessed though that he has had very few part of his body permanently compromised by the disease.
  I will leave you with some pictures...(as always!)...

It was Sadie's night to stay up last night and as usual, our little tomboy wanted to play "Monster Games"

knocking down Daddy's fort

Then it was the Silver Monsters

                                                                                    vs.
The Gold Monsters

my guy can't even keep his scary eyes  on...I think we're gonna lose

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My good friend, Michelle made the kids a care package with a gift to open everyday in October until Halloween. Yesterday, they had just opened their daily gift (fangs) when we got a delivery...

 The cute little ghost in the 7th pocket is moved everyday. The kids are so excited for Halloween now and their day to move the ghost and pick the gift! Isn't Michelle creative? I think it's so sweet!
FANGS!!

Caleb looks a bit like that Taylor something-or-other who played the warewolf in Twilight in this one

Thank you for checking on Daylon! Enjoy your family. In the words of my grandfather, "Have a happy day!"