Day +88

Daylon after his steroid cream

 I have failed you all, yet again, and I am sorry. :) I am realizing more and more that although I thoroughly enjoy blogging, I'm horrible at it. Our time is consumed so much lately by either taking care of the older four, entertaining/cleaning/tending to Daylon, or spending some quality family time. Daylon is requiring quite a bit of attention at the hospital due to "getting sick" through out the day and feeling miserable, or on his "good" days working on physical and occupational therapy to help his brain rewire itself so he can one day be a fully functioning, responding age appropriately person. I feel like we're moving right along!
  Saturday night Daylon spiked a fever, which set us back 3 days. He hasn't had a fever since, so assuming that continues, we should be discharged by Thursday! Yay! I'm excited but I'll believe it when I'm signing the papers to get him out of here. :) We've heard this before.
  Today was his second successful round with dialysis downstairs! That place is such a dungeon and spooky, but it's our ticket out of here, so I'm thankful!

Too big for his stroller (the table top cut up the top of his legs) and too little for a wheelchair. A jogger was just the right fit! Plus it has plenty of room for his memory foam pad and it has a rain cover that doubles for a mask (since he never wants to wear his)

  Today's pass was a quickie but SO MUCH FUN! Daylon really enjoyed his brother and sisters and laughed at everything they said and did. We returned to the hospital for a dressing change and meds and he was like a new man! He was laughing and talking up a storm! It was so stinkin' cute, if I say so myself. Rachel (his nurse) was trying to pin him down so I could change his bandages and he almost rolled completely over trying to get her name tag! We were so shocked! Let me catch you up....Daylon rolled for the first time at three or four months (can you tell he's our fifth? I don't even know how old he was!) but when he did, the skin on his side ripped right off. He literally screamed as he finished the roll. It was awful. He bled through his onesie. He cried, I cried, Brian cried and I may cry again just telling you about it. It was during such a scary time in our life. Anyway, he was a quick learner and ever since then, will not roll. Tonight he was right on the edge of rolling. He didn't even seem to notice any pain and when he rolled back, there was not a blister, not a mark on him. I AM SO GRATEFUL! When we were back on 5C I had several nurses ask me if I had it (the BMT) to do over again, would I? At the time, I chuckled and said, "I'll get back to you on that." My response was much different than my thoughts. I remember thinking, "We may have made the biggest mistake of our lives." You have to remember, we didn't even know if the transplant would be successful for JEB kids and now I was sitting in a dark ICU room with a baby who had brain damage to the better part of the entire left side of his brain, a life threatening liver disease, renal failure, respiratory failure and we had no clue if the BMT progress could work faster than his year long life expectancy. It was a rocky road and the outlook was too promising.  I am happy to sit here two months later and tell you, absolutely, I would choose this Bone Marrow Transplant for my son again. What a joy it is to be able to say that!

That's all he wears for dressings these days! It used to be from below the neck!

Cue over tired baby...

Today's bandage change, brings a whole new type of change. I made the decision (after consulting Brian...and Rachel admittedly) to remove his arm dressings entirely! He hasn't had any sore on his arms and they were pretty much there to make me feel better, so we thought it might be a good time to test the waters! I'm actually not nervous. His skin is tolerating so much these days and beginning to even feel different. I also got an email from Dr. Tolar this evening telling me that he's not finished with Daylon's Day +60 biopsy results, but he wanted to give us a sneak peak.

Sorry for the glare! I took a picture of my screen. Anyway, the red signifies the Laminin 5, which if I understand this right, is one of the three links in the laminin chain. This growth has appeared throughout the laminin. The more solid the red line, the better.

The transplant is working!! What a good feeling. :)
 Speaking of good feelings, there is a glimmer of hope that our insurance company Blue Shield of California, may finally be helping to pitch in with our dressing costs!!! This would be SO HUGE!!!   We're talking thousands and thousands of dollars per month! EB is a VERY expensive disease and unfortunately, it's not recognized by several insurance companies out there. I have spent easily 100 hours on the phone with them trying to get them to pay for bandage costs. It really is ridiculous how much the EB parents have to go through to get this paid. No joke, when Daylon was first born and Blue Shield didn't have a "code" for EB and wouldn't pay for ANYTHING. We had to pay $147.65 per 15 minutes for him to see his nutritionist. That was just one of the many expenses that EB families have. Thankfully, his doctors back home Dr. Blumberg and Dr. Hill (his pediatricians) and Dr. Metz (his pediatric dermatologist) were saints and helped us fight to get a code written. For us, it's the fundraisers held in Daylon's honor have been a huge blessing as well. It's been nice too, to have all the bandages thrown onto the hospital bill where the insurance company can't argue a thing. As usual, I've wandered way off topic...I'll keep you posted to our great insurance news! Just thought I'd throw this out there, but if you're interested in helping EB families around the country in anyway, you can contact the DEBRA organization to learn how.
  Other Edling News: The big day was Saturday where the RMH and the University of Minnesota made our family 'Goldie's Family'.

lookin' good!

First up was a pre-game party and lunch. We met a lot of really great people had were treated to a top notch lunch. The kids weren't thrilled with the menu, but Brian and I loved it!



We got to go out on the field next to tape a little video of us and Goldie the Gopher to show during the game. As we walked out of the tunnel and onto the field, the student fans yelled at the kids "Future Gophers!!!" For me, it was a bit overwhelming to have so many people yelling at you, but the kids were just stared completely horrified! :) They didn't know what to think! While we waited for Goldie, we got to play on the field and watch everyone get ready for the big game. This was the first time Minnesota played USC since 1980, so there was a ridiculously HUGE turn out. A decent amount of USC fans actually.

one of those melt-your-heart-being-a-mom-is-the-greatest moments caught on film



You know what they say: "The rhythm is going to get you"-Gloria Estefan



Caleb and Goldie meet!

The cheerleaders spotted the girls and came over to fuss over them!





This was a crowd pleaser...reminds me of my high school days :)



Caleb got to run on the field

Before too long it was time to take our seats!

One of my favorite things about going to any sort of game is how patriotic it makes me feel. I love being in a crowd of 50,000 + and it instantly goes quiet and everyone is brought to their feet at the sight of this beautiful flag. The 'Star Spangled Banner' was played by the band and I could help but notice that within a minute or so, of the song starting men and women, young and old, of all different backgrounds began to softly sing the lyrics. As I stood there, singing myself, the singing grew louder and louder giving me a feeling of brotherhood and unity with the strangers around me. I love this country. I love that our flag can do that.

    The game was about to begin! It was...

vs.



and we were caught in the middle of it. My efforts of trying to teach the kids all week to say "Go Gophers" was in vain. From the moment we walked out the door it was "U!S!C!" often accompanied by stomping. I have to admit that at the game, the younger three were a bit quieter about it than I had thought they'd be given the morning. I think the two teams sharing colors contributed to that. Keira was plain ticked at me, when USC came out on the field and received a "Booo!!" She sat up tall in her chair and looked all around her giving everyone the evil eye. She then turned to me and explained that if she didn't cheer for USC then they would be sad because they might think no one likes them and they would lose. I couldn't say no to that kind of logic and so she began. I'm sure our neighbors were confused to turn around and see that the USC cheers were from kids dressed in Minnesota clothes. :)  The Minnesota fans are SERIOUS FANS. I guess you'd find that anywhere, but I really have noticed how into their teams Minnesotans are.  

I love when they play the music on the intercom and everyone sings! It's so fun! On the radio "Sweet Caroline" always came off as a slightly annoying song, but at a sporting event, it might as well be everyone's favorite song. I guess nothing says football like hearing Neil Diamond..."Sweet Caroline! Ba, dum, dum, dum!"

GO....team!

There was a whole lot of this:

Which lead to a whole lot of this:

Which lead to a whole lot of this:



Is it bad we used food to keep our kids occupied? Don't answer that...I already know the answer! :)



It was 53 degrees out, but Keira kept complaining that her hair was burning. Turns out she was right. We all got a bit rosy from catching some sun....FINALLY!

We were up on the big screen! Just what every woman wants to see: a 20 feet version of herself. :) LOL!

The kids thought it was pretty great!

The second the van door shut (literally, the very moment) Brian yelled, "OK, kids! Who's our team? USC! USC! USC! USC!" This continued for about 20 minutes due to our kids determination and surprisingly strong vocal abilities.

Oh, and USC won. We we'll always be Minnesota fans too for showing us such kindness! Thanks University of Minnesota!

Thank you all for your love and support. We feel blessed to have you as friends each day.

Sweet Caroline dreams! ...ba, dum, dum, dum