Tuesday, September 21, 2010

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...


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!"


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


Anonymous said...

Love the pic at the top of the post. You can just see the spark in his eyes. It was missing for a long time in his pics.
I know tha God will continue to heal his brain as He has already healed it so much. Bless His wonderful name!!

Angelique said...

You guys are famous!!!! What an awesome day! It's so great to see how well Daylon is doing. It was fun getting to see him the other day. We've been telling all our 5C nurses that we had a "Daylon sighting" and they are all excited about his progress as well.

Mom to Many said...

Jen will you knock it off. (wink) You are doing fine. Updates will come as you have time. Your adoring fans (I am one, now that you are famous) can wait. Your priorities are right. :o)

And these are working bodies, 20 ft tall or not. I know it is hard to try to accept the gifts that come with child bearing. I call them frequent flier miles, Lol! I have not yet cashed in my frequent flier miles either. (Hopefully it will happen someday?)

And about feeding your kids to keep them busy? Shame shame, just kidding, I do it too.
As long as they do not have free access to junk all of the time it won't hurt them a bit. I can't tell you how many packages of iced oatmeal cookies we have bought through the years that were half full by the time we reach the checkout. It's called SANITY.

The pictures of Daylon about made me cry. I am so glad he is able to complain about being tired. What a blessing. He has come so far.
(My heart aches for little Bella right now. She has so far to go right now.)

I am thankful to Minnesota for their kindness to you also. Minnesota is a great place. (My F-I-L is from Minnesota.) I must add I love Minnesota for their vital records too. I wish all states were as easy to work with as they are for a genealogist.

Keep smiling!


Wow Thursday discharged hu? I am still in awe!!! Daylon has proved every one wrong and has literally had to fight for his life! I am just still SO amazed at the progress he is making!!!! GO DAYLON!! WHOOP-WHOOP!!!

The insurance news is AWESOME Jen!!! I bet you got up and danced around for that one :) I am glad the Doctors help fight for a code for EB too! I LOVE GOOD NEWS!!

I hope little( or should I call him BIG ) Daylon feels better soon from being sick. I love that he has a blast with his sisters and brother. The jogger stroller looks so comfy for him! That is such great news about him trying to roll over to grab the nurses name tag! AND NO SKIN RIPPED OR BLISTERS!! You can really tell how far his skin has came since the transplant! You guys have made so many hard decisions for Daylon and with the power of prayer were able to know what is best for him. What a blessing for Daylon to have you as his parents!!

I love all the pictures of the game! Looks like it totally was a once in a life time thing! My husband always gets our daughter cotton candy when he takes her to Angels game :) Whatever keeps them busy sometimes right?

I am just so Happy for you and your family Jen!!

Kristyn said...

Whoot whoot to your post. Jennifer, as always thank you for posting and keeping us up to date. I love your writing girl! I'm so happy as i sit here a cry and know that Daylons has made it. ! We love you guys!

Anonymous said...

What an awesome sight--so few bandages!! You & other EB families truly inspire me. There is a reason that God chose all of you to care for these Extra-special babies. You truly are an inspiration to me to take extra special care of my own little ones & to enjoy all the things that children bring (good & irritating :) ) God Bless!

The McLaughlins said...

I'm so glad to read that Daylons skin cells are growing so nicely. It's also awesome to see him without so many bandages. He's progressing so quickly. It was really scary there for a bit but he is such a fighter. I know he can and will make a full recovery and be cured. That is so awesome that he rolled over to get his nurses name tag and didn't get a single blister. Yahoo!

Those pictures of you guys at the game are awesome. So cute. I bet that day was a welcome relief to all of your everyday stress. And don't worry, we all use food to keep our kids happy when we go some place like a game that's exciting for us but super boring for them.

Take Care,
Amber McLaughlin,CA

Bella's Blessings said...

Hilarious. We did the EXACT same thing with Ali at the Twins game on Sunday... first it was cotton candy, then ice cream in a helmet, then stuffing popcorn in daddy's face. She lasted 4 innings. The picture of Daylon without his shirt is simply AWE INSPIRING. THANK YOU for being willing to be the first. THANK YOU for willing to throw your hat over the wall with no foreseeable way to get it back. You are giving so many families HOPE. Proud to be by your side!

Elle's Family said...

What a miracle -Laminin 5 -yeah!!!!

Kim M said...

Yeah for Daylon! I love that you are too busy with Daylon and the kids to blog! That is a sure sign that things are better for all! I cannot wait to watch him flourish with all the stimulation from the kids.

I am praying that Daylon's story is an encouragement to Tim and Angi for Bella. I know she has different issues than Daylon but she also has strong parents who are not willing to give up on her!

Kim M
Waterford, MI

Whitney said...

I ran across your blog the other day after reading about baby Robert in Uganda. Since then I check non stop to see if you've posted any updates about Daylon. I had never heard of EB before, but I have a good friend who is a Genetic Counselor at Riley Children's Hospital here in Indianapolis, IN. I called her in tears earlier this week asking her to explain what this condition was. I know a little bit more about EB now, and I can't even tell you the mix of emotions I've felt since following you all over the last few days. I'm so happy to read of the progress this little guy is making. I can tell there have definitely been ups and downs, but each day it seems as if there is at least some good news. But at the same time (gosh, I can't even get through this without crying), my heart aches so much for Daylon and for you and your husband as parents. My mind keeps going to the pain, the pain that he must feel, and the pain as parents you must feel for him. Then I read on and see a picture of him with a smile on his face and my heart just melts. I truly am amazed by him and by you. I just wanted to thank you for the inspiration that your family is to me. I have been so broken yet so filled with joy reading through your blog. I pray that Daylon will continue to grow and progress. It's so clear that God has some amazing things planned for him!

Carmel, IN

Amy said...

Great post and I read over on Elle's blog that Daylon is home at RMH. Congratulations!!!!

Shelley said...

Beautiful pictures - thanks for sharing! And don't you worry; there is never a need to feel guilty about when you're putting your family first. :) We're thankful for whatever updates you can give. Continuing to pray for you, Daylon, and your whole family...

Anonymous said...

Baby DAYLON you are AWESOME!!!! I tell my husband I need to check on my EB Babies before I can go to bed. I am praying for you and your family! I am not a person of many words, but I can pray for healing, strength, and knowledge for Daylon and everyone involved in his care.

Becky in Texas