Day +109

Hello Everyone.
I just wanted to let you all know that Bella's heart stopped yesterday afternoon and she went to live with our Heavenly Father and elder brother, Jesus Christ.  We are all shocked and saddened by the loss of sweet Bella. I ask that you please take a moment from your day to visit Bella's blog and leave a message for her family. We have come close to loosing Daylon a few times, and I was beside myself. I can only imagine what her poor family is suffering right now. We can all rest a little knowing that Bella is finally free of EB and all the pain that she has had to endure in her earthly life. We love you, Bella! Until we meet again!

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 Daylon has had a good weekend. We have witness the benefits of your prayers in our lives once again.
-On Tuesday I posted that Daylon's post stroke issues were really concerning us and that his personality wasn't improving the way we'd hoped
-On Wednesday we united in special prayers for Daylon, with an emphasis on his kidneys
-On Thursday...no joke...Daylon woke up happy and smiled and played all day. We were thrilled with the happy change of events, but honestly wrote it off as a fluke day.

Daylon playing with his "Tickle me Elmo"

   ALL WEEKEND LONG, Daylon has smiled, played and coo-ed! It's been SO amazing to have our happy baby back! He's so adorable! I just want to squeeze his little cheeks! I don't, of course....his skin is good, but not that good! :) I know he's my kid, but I think he's so cute! Oh. I have a new first in the life of Daylon! A therapist was fussing over him and said, "He's such a pretty baby!". I just sat there numb and on the verge of tears. That has NEVER been said about him before! When people look at an EB kid, they often have a hard time seeing beyond the sores, pain, suffering. He's always had a personality that shines through all his boo-boos and he's been called a doll, sweetheart, angel, sweet, pumpkin,even cute (which I pretty sure people use to describe his personality) but never pretty. Looks aren't everything, that's for sure,  but to hear that he's improved enough for other people to see him as his family and friends see him, felt great. :)
  Daylon's CSA level was upped again on Saturday. His rash is getting worse and they want to keep his levels up high to help his body fight GVHD, if that is what it is.  Considering all that, his kidneys are maintaining consistency at the level they're at, which is a little miracle in itself.
   On Sunday, Daylon rolled a bit during nap time and his G-tube started to fall out. I'm almost grateful I was at church for all that. By the time I called, Brian had dealt with the fiasco (he called the BMT Fellow) and it was over. Good save, Brian!
   OH! I forgot! The end of last week Daylon started using his left hand to clap by hitting his tummy! It was so fun to watch him adapt to his circumstances and be happy. Each day this weekend, he made big strides with moving his right arm up and getting it to interact with his left. Sunday night he start actually clapping! That's right folks! Both hands, moving together!...on purpose! Go Daylon!

   Well, that's about it for now. I'm totally drawing a blank. I blame 4 hours of sleep each night. :) We're so thankful that you're all Daylon's cheerleaders!

Pictures from this Weekend:

Friday: Keira and her puppet for the RMH puppet show



Saturday: Built a fort in the bedroom. Played, ate dinner and then watched "The Princess in the Frog"



Sunday: after dinner

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!"

Thank you!

I just wanted to drop a little note to thank all of you who participated in the prayer for Daylon's kidneys tonight at 8pm. I really felt the Spirit and was comforted by the idea of so many people communing with God from all over the world for our little guy. I know I say it a lot, but I'll say it again: I am thankful for your prayers. I am thankful for your support. I am thankful for your comments. I am thankful for you. You inspire me and give me strength. We've been told several times, "I don't know how you do it" and I know exactly how we do it...we have a strong belief in God and an amazing support team that pushes us everyday to keep going, to keep a stiff upper lip and trudge through the mess of it all.  On those days when life seems too much handle, your words of encouragement and support helps us to see the sunshine on a cloudy day. I believe in God and I believe in prayer. I know we've been heard and now we listen for our answer. Sweet dreams.

Today: Day +103

picture of cuteness

Where, oh where, to begin? First, let's go over Daylon's health and then we'll talk about Day +100.
 Yesterday was NOT a good day. Brian has this tone of voice that he uses when he's really angry or really scared. I woke up to that tone. "Jennifer, get up!!" I jumped up in bed and leaned into Daylon's crib (which is pushed against my side of the bed) instinctively. Sure enough, there was a problem. Daylon had ripped his G/J tube out ....COMPLETELY OUT....AGAIN...and laid there in his crib asleep and covered in blood and guts (mostly guts). Brian had gotten up and taken his shower and didn't turn on the light until he went back in to give Daylon his 6 am meds. Daylon has oral meds (given through the j portion of his tube) given every even hour with the only exception of 4am. Of course. That leaves 4 hours of no meds and that's when it gets ripped out. Between all the fluid and mucus oozing out of him for who knows how many hours (keep in mind this hole is HUGE!!) and the constant feeding pump he's hooked up to (which continued to pump milk down the tube and onto him), he was drenched and smelled like death. I quickly cleaned him up and applied pressure to the hole, while Brian called the BMT Fellow. She had us take him to the ER. It was Brian's day for dialysis, so he took Daylon to the ER while I stayed behind to get Keira ready for school. The doctors in the ER worked on Daylon for a while and then he went to the OR. It was Brian's first time being in the OR with Daylon since he was born, and he handled it like a trooper. Daylon stomach needs to have reparative (?) surgery, but the surgeon wants to wait a couple more weeks before he cuts him open to give Daylon a chance to grow a bit stronger. They ended up not needing to stitch him (LOVING that foam gel!) and the procedure went well. After he was out of recovery, he had to go to dialysis, where he went from 15.2kg (yikes) to 14.0 kg (yay!), then BMT clinic. His daily labs showed that his CSA levels were low again, so they upped his dose. I have to admit that's a little discouraging since we were expecting them to drop his level this appointment. His body is metabolizing the med too quickly. More CSA = more kidney issues. Ugh. Whatyagonnado? Since his levels are low, we should have seen his kidneys perking up...that will change though after Wednesday! :) They still feel that even though the biopsy shows no GVHD, that that is what it is. Apparently, it's really hard to spot GVHD on a biopsy. We stopped the Bactrim and today he'll receive a med given through a nebulizer that will act in it's place. He just gets it once a month in clinic! How easy is that!? Hopefully, it will make the rash go away. We'll see what happens. GVHD is the last thing this kid needs. I've never really explained what it is, but GVHD happens after transplant when the new graft (bone marrow) fights the body. It is potentially fatal, but the docs here are pros and can keep it at bay with steroids (which cause swelling and destroys the skin). For now, Daylon is on several steroid creams, 4 times a day. He has a lot of gagging and vomiting and diarrhea, which could be signs of GVHD, but also signs of a torn up stomach and BMT.

  His mouth is still a wreck. Thank you for all your insight. Several of you left really helpful comments. His lips aren't cracked from dialysis drying him out, so that helps things to look a bit better.
  The last couple days have been hard for me mentally, taking all this in. I know he's awake and a million times better than he was, but the realization of everything is starting to hit me. He's not the same. I can't sort through everything and tell what's the side effect of a crippling stroke and what's him just not feeling well. He can smile, you've seen it, but somedays he cracks one little smile for a split second and other days he'll smile for a minute or two once or twice a day. He used to smile at everything, and was just the happiest little guy. I was always amazed that he could smile and laugh, while having fleshy wounds covering his body.  We have to work so hard to get him excited for happy about something. He's so very serious. It breaks my heart to see his sad face. One of the things that's the hardest to handle, is that he doesn't always want to be touched. He was such a cuddly baby before transplant and we held him all day, but now when I go to hold him, it's really a 50/50 chance if he won't cry harder when I pick him up. My heart just sinks. I hate watching him suffer so much and not being able to do anything. If I knew for sure that it was all post BMT problems, I would be able to push right through this much easier. Not knowing if this is just how his personality will be from now on, is kind of depressing. Speaking of depressing, this rant is ending. :)
 So Daylon's Day +100 was Saturday. And it was "awesome" (I have this on very good authority, by a five year old who was there)! We started celebrating early on Friday afternoon after appointments. We back to Como Zoo to finish up our tour from earlier in the week, then to Como Park. Can I just say I LOVE FALL!?! It's so stinkin' beautiful up here! The kids loved running around and playing and I (of course) couldn't help but snag a few pictures. Fall just makes the world come alive, ya know. The air seems cleaner, people seem happier outside, I'm happier outside...it's like you just can't help being in love with your husband and kids. Since I've been a mother, I've noticed that "childhood" comes alive in my children during this time of year. How can you not love that?

Violet just woke up. This picture got me thinking...Christmas is coming! I need to get a picture for our card!

 On Saturday, Daylon only had dialysis, so we left at 2pm cutely dressed kids in tote, determined to get a picture for the Christmas card and even more determined for a fun day. We decided to go up to Taylor's Falls (north) to enjoy some Fall. It's an absolutely beautiful drive through bluffs (the closest I've seen to a mountain since May!) and quaint little towns with populations of less than 1,000. Lots of farms, lots of water, lots of trees, you get the picture. We checked out Taylor's Falls for a bit and then ended up crossing the state line and headed into Wisconsin. I don't even know what town we were in. It was breathtaking though. I always kind of shrugged off  Dialysis Dave's comments about Wisconsin's beauty, figuring he was biased since he lives there. Yeah, um, there's a reason he lives there. :)

Not one turned out. Daylon wasn't having it and Sadie was way too interested in the twigs to look up. Oh, well. I guess we'll go on another adventure...if we have to :)

  We jumped, ran through, threw, dived, just played in general, with the leaves until dark. It was just quality Family Fun time like when we were back home. I've missed that so much. It keeps Crazy Mom away (she's my alter ego, sadly). We decided to enjoy Daylon's new public freedom...freedom may be too loose a word....allowance?...anyway, we went to eat at Baker's Square. That right. We were living it up in a coffee shop. It's okay to be jealous! :) They were super helpful and seated us in a far off corner of a restaurant. We had a really great time and the kids behaved perfectly. I know, I'm still in shock. Restaurants bring out the beast in children. Anyway, when we got home, we all ready stories and snuggled (even Daylon was in for story time!) and then sent the kids off to bed. It wasn't a big party or anything, but it was the type of day you don't forget.
  I can't believe it's been over 100 days. You all are amazing. Thank you for sticking it out with us. We love you. Sweet dreams daydreams. :)

Prayer Request

Hey Everyone!
The past couple days have been crazy and we were able to celebrate Daylon's Day +100!!! Horray! Anyway, I'll write more about that later. I just wanted to make sure I shared this info in time....

My Aunt Gwen came up with a great idea for Daylon: Since the idea of a kidney transplant is on the table right now (pending how he does the next 2 weeks or so), she thought it would be a great idea if we had everyone interested in praying for Daylon, participate in a little prayer moment. We agree! We would be so grateful for all the extra prayers for Daylon! If you're up for it, please mark your calendars (or enter it in your blackberry =)  )

Wednesday, October 6th at 8pm Central time


I think it's a fun way too unite our little "Team Daylon" too! If you're not religious, well wishes are welcome too! Thank you all for your love for our little guy and our family, and the support you bring us everyday. It's been so touching to see how many people care about Daylon. We love you!