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

Day + 85

reintroducing solid foods with Daddy ...SHERBET! Yum!

Hey Everyone!
I just learned, from one of you, that there is a little boy in Uganda with EB. The idea of having a kid with EB in a poverty stricken country, makes me feel ill. My heart goes out to this little guy, Robert. To read his story and offer support through comments or financial, go to http://servinghischildreninuganda.blogspot.com/2010/09/meet-baby-robert-robert-is-one-month.html
 Thank you for letting me know about Robert, "theitaliandyes"!
  Daylon has done pretty well today. He really perks up being at home! Thankfully, he didn't need dialysis today, so we were able to go out on pass for quite a while! We played up in our apartment for a while and then went down for dinner. We ran into the Pops and the Ringgolds and he charmed them for a bit (while the other 4 went wild!) and then after dinner we went outside to play on the Caterpillar. The Pops joined us for a bit and the kids loved playing with Chloe. She's such a doll!

Sadie, Keira, Violet, Chloe, and Caleb hamming it up!

Daylon was being so sweet! He LOVES being outside!

Once Daylon and I got back to the hospital he was in such a good mood. I couldn't help but snag this video of him! I know he's my own kid, but isn't he a hoot!

   Tomorrow is a big day for our family. The RMH has paired up with the University of Minnesota and they have chosen our family to be their "Gopher Family".  Basically what that means is we were all invited to attended the U of M vs USC (I know. Brian ALMOST died.)  game tomorrow as the U of M's special guests. We have a VIP lunch and pre-game party at noon, followed by a media thing at 2pm, the game is at 2:30 and we'll be watch from the sideline (I really hope my kids don't try to go long!) in our new U of M clothes! They're supposed to make some video of our family to play up on the big screen during the game. I REALLY don't like attention, but this is a once in a lifetime thing for the kids and I mean, hello, it's USC. Back home, we always look for the scrimmage game to take the kids to (tickets are upwards of $100 each and scrimmages are free. It's a no brainer) and this is going to be a million times better. All four of the older kids can spot a USC sign a mile away, so the goal the last couple of days has been to cheer on the "Gophers" ...just trying to prevent an embarrassing moment during Saturday's game! Dr. Wagner told us that Daylon needs to stay behind. :( I'm so disappointed. But, he's the boss and if Daylon is ever going to get out of here, we need to show him we can handle the bad news. Don't worry, I'll take LOTS of pictures for him, I'm sure! :)
  Well, I need to hit the hay. Busy day tomorrow that starts early! Sweet dreams.

Rachel wanted to hold him before she went on vacation...since he'll probably be discharged by the time she comes back!!!

Erin and Daylon playing around after pass tonight. She was cracking up at his ROAR! :)

Day + 83

I had my little pow-wow with Dr. Tolar. Let me bring you up to speed.

GVHD: There is still a chance he has it. So far, Dr. Tolar says he is leaning away from GHV while Dr. Wagner thinks it is. Having GVHD requires a really large amount of drugs including steroids. After reading about Sam, I want to steer clear of those meds! Dr. Tolar is the primary doctor so, he will ultimately make the final call. Scratch that. Brian and I will make the final call...but he'll advise us. Please pray this rash will go away. Daylon can't afford to add GVHD to the list of ailments.

Nutrition: Daylon has been gagging at anything more than 5ml an hour, so his feeds have been off or near off for over a week. His nutritional needs are no where close to being met for a regular 14 month old, more or less an EB 14 month old.
   Culprits
    -The x-ray shows that the 'j' portion of the g/j tube is not in his jejunum like it should be. It would require yet another procedure to fix.
    - He has started a special formula for kids with renal failure and it could be that his tummy is bothered by it.
    - Dr. Wagner wonders if it's GVHD in his stomach, which would go along with all the diarrhea (yep, I went there! )
    -It's also thought to be mucositis still bothering his stomach. Both Tolar and Wagner wonder if there is residual effect since he had problems to begin with (from being JEB) and things may take longer to heal. He is still has occasional bleeding from his g-tube.
     - Withdrawl is still on the table as well

pick a problem....any problem! You're guess is as good as ours! I just need them to figure it out quick before his lack of nutrition becomes a real problem. Oh, and TPN (IV nutrition) is not a first choice since he has renal failure and therefore, still considered to have VOD (it harms the liver).

Dialysis: I love dialysis. I hate dialysis. We can't leave the hospital until Daylon finishes 2 rounds at the Mayo building (which come to find out is NOT the same Mayo building everyone talks about! The REAL one is in Rochester, MN. Thank goodness. ). He failed the first two and has never been back. Sunday was his scheduled day off, Mon. he had off for bad blood pressure, but good labs, Tues they just cleaned his blood (in his room), and today he had off. It's great to have so much time off, but that means no trials too. Hmmm. Toughie. His BUN and Creatinine are high and all over the place, but since he's on dialysis the docs say you really can't count it. Potassium, phosphorus, magnesium are all good, so that's what counts. His weight is staying under control too.

Neurologically: Dr. Tolar had the best neurologist he knows look at the MRI. The thought is that with time, the fluid should resolve. It will take years though, so in the meantime, we need to be extra careful to help him prevent falls or injuries. He said that if he hits his head or is in a car accident, etc. then we need to take him to the ER ASAP so they can drain the fluid before it causes permanent damage. This will be especially challenging since he'll be learning to walk and be a toddler in that time and well, kid = klutz. Brian and I are putting are heads together to come up with a brilliant plan. If you have a suggestion, we'll take it!

Length in Stay: Dr. Tolar says that we're still on tract to go home in December! Hallelujah! I was worried that we would have to move here for a second! He said that he will always be Daylon's doctor and that he will help the doctors back home understand EB BMT and he will oversee Daylon's care. That's a relief. California here we come!....in 90-ish days. :) Interesting factoid for you: if Daylon had had a smooth transplant and had started chemo when we were originally scheduled, we would be leaving this weekend. Sept. 18th was going to be his Day+100. Now Oct. 2nd (Aunt Michelle's birthday!) is, but it doesn't really matter as far as going home is concerned.

Mood: Since Friday Daylon was fussy, moaning constantly, fighting sleep, thrashing like mad and no one could figure out why. Tolar and Wagner continued to check on him and run tests but couldn't come up with anything. It was alarming really. All I could do was hold him and try to comfort him. He was nothing at all like the kid he had become again. They ended up going back down on his Methadone and Adavant to try to help, in case it was withdrawl. Well, within a half of a day there was improvement! He was holding up his head again and willing to play with toys. He even was babbling by the end of the night

 Today he was much more alert and energetic. He finally got to come home again on pass and he was so happy at home. He was laughing and talking. And! Ladies and Gentleman! I am thrilled to announce: He got his ROAR back!! He growls and roars all the time now! I love it! When he wants my attention he growls, "MOM!" It's so deep and adorable. I think he was in pain from his tummy or whatever and needed the pain meds, not that he was having withdrawl. If my stomach were bleeding and the bottoms of my feet torn up, I would want meds too. The thing is, he came here on pain meds so he probably won't be able to go down to nothing.

  Brian and I were talking tonight about how much his skin has changed. It can still tear pretty easy, but it's holding up so well. Today when we put on his onesie the fabric touched his elbow for a moment. I held my breath and went in for a look and to my surprise, found nothing. Not even a red mark. I'm shocked. Hours later. I'm shocked.

  Brian and I feel so blessed to have such wonderful friends and family supporting us through this journey. Thank you all for taking time out of your day to check in on Daylon and our family. It means so much to us. Thank you for your prayers. WE FEEL THEM! :)Sweet dreams.

Day +81

check out the cow-lick in the middle of his uni-brow! It's too funny!

\Hi Everyone!
Things around here on 5D have been busy! Payton (RDEB), who is Daylon's next door neighbor, had is transplant on Friday, today baby Elle (JEB) starts chemo today and with any luck, Daylon should be out of the hospital by the end of the week! Bella (RDEB) is also in the hospital, on 5C and hopefully they'll  all be taking their next step back to 5D in the next couple weeks. :)
  Dr. Wagner was going to have Daylon discharged today, before he needed his Hickman replaced, but has now decided to keep an eye on him for a bit. The next step as well, is to be able to handle having dialysis at the Mayo building. Today was try number two and a "try" was all it ended up being. Daylon is the first EB kid to need outpatient dialysis and lets say they're not too familiar with EB. When dialysis travels to the room, it's considered ICU and the nurses who have come up have become familiar with Daylon and our routine. On one trip down, ECG tabs were put on his chest before I was able to realize what he was doing. :( It's really dark and kind of creepy in that building, actually. For being world renowned, you'd think they'd have more windows or add a fresh coat of paint. Anyway, today when we got down there his blood pressure went all the way down to 49/30. Yikes. And that was before he went on. They decided to bring him back up to his room, where there resources available if he were to need them. Eventually, Dr. Vergese decided to cancel dialysis for the day. Woo-hoo! Two days in a row! I have a feeling that tomorrow will be an early day though.
  This weekend Daylon's just been kind of sad and moaned a lot. I wish he'd smile a little more...it'd make me feel better! They've turned off his feeds to see if that will help him to be more comfortable. He's been so gaggy too

Rachel doing an impersonation of Daylon's eyelashes on his right eye. She says (jokingly...I think!) that she's going to take an eyelash curler to it! His face had a ton of sores on it and one time, especially on his eyelid and around his eyes. The scars make for interesting hair growth. :)

 
  Well, Dr. Tolar is coming in the afternoon and we have a few big things to talk about. I'll catch you up on all that later! Hope your day is going well! Thank you for checking in on Daylon! Have a happy day!