Day + 128 :News, news and more news

Hey Everyone!
There's a lot to say tonight.  I actually had a lot to say last night, but I needed to process everything to keep from rambling. :0) I'm good at that.

  First, I want to start off with some bits of happy. This Thursday, the RMH staff hosted a Halloween Party for the families here. The kids had such a great time! There were games, a scavenger hunt, spook alley, trick-or-treating, caricature artists and more! Every single time I think that the Ronald McDonald House can't possibly get any better, it does. The staff absolutely goes out of their way to make sure that the children here, who all have so much sadness in their lives, experience happiness at the same time. This is such a great place. Here are some pictures from the party. ...Oh! Caleb's not in them because literally 90 seconds after we got his Superman costume on him (and he was dang cute!) he threw up all over himself and the kitchen table. That's right. On the table. Where we eat. Ah. Good times.
FYI: Keira is a jellyfish, Violet a cowgirl and Sadie a ladybug



twirling her tentacles



 I only started this blog when we started our BMT journey. To allow you to better understand the last year, and since I speak best with photos, I give you Daylon....

Daylon Halloween 2009: Our little Monkey

He only wore this costume for about 10 minutes maybe, but I had to dress him up for what we thought would be our one and only Halloween as a complete family.

Daylon Halloween 2010: Daylon the Dino

Counting our blessings each and everyday.

On Friday RMH invited two families to meet and visit with Brett Favre of the Vikings and we were asked to be one of the families!! Brett Favre is the QB and holds several career records for the NFL. We got to chat with he and his wife for about 15 minutes before he went out to the courtyard to meet the other house guests. We got our pictures taken with him and he signed autographs for each of kids. It was so nice and yes...Brian was nervous. :)

Alright, so on to the nitty-gritty. Daylon had an eye doctor appointment on Thursday and we found out that he needs glasses (we already knew that pre-transplant, but they are actually going to do something about it now) which is common in EB kids and well, to be honest, in my family. We also learned that he had a corneal abrasion in his right eye. I know it'll probably sound weird, but that was a heart sinking thing for me. Corneal abrasion have been Daylon's nemesis until the Bone Marrow Transplant. It's been such a HUGE benefit of the transplant to see his eyes happy and pain free. I had noticed that his eyes were watery, but he had them open so I didn't think anything of it. As of this morning, Daylon now has a corneal abrasion on his left eye as well. This one, I know. This is one, like the old ones. Eyes closed, eyes and skin red and swollen, watery, and a fussy kid. I don't know if you've ever had a corneal abrasion, but I have and let me be the first to say, they HURT. Like, all you can think about, kind of hurt.

  On Friday, Daylon and I went to the BMT clinic to have a nice, long visit with Dr. Tolar. Daylon's million appointments and Dr. Tolar's schedule have been conflicting and with the exception of the biopsy day (where he saw Daylon awake for about 2 minutes) he hasn't seen him since Daylon was released from the hospital. We talked, and talked some more. The easiest way I can think about going over this is to do a Q and A straight from the notebook I use. I'll paraphrase Dr. Tolar to the best of my memory (and notes!). Here we go:

• Q:Does Daylon need a kidney transplant? Dr. Cashton is telling me he does.- A: Absolutely not. (whew!) He does not decide that. You and Brian and I will decide that much later. I won't allow it when he's on such a high dose of CSA . (Soooooo happy to hear that! I won't mention everything that was said, but lets just say that Dr. Tolar and Dr. Cashton have been "speaking" regularly about Daylon)
• Does Daylon have GVHD?- A: No. A rare side effect of Bone Marrow Transplants is severely sensitive skin and that is what I believe he has. Switch to sensitive cleansers, avoid the sun, etc. until we can pinpoint the allergies he has. (Does anyone else see the irony in this? Ha, ha! I've gotta laugh at this one! We did the BMT for sensitive skin, and now he got a whole other type of sensitive skin...well, at least the latter is better) Once the day +100 blood tests come back that he's 100% engrafted with Caleb's cells still, then we'll start his CSA wean. (YAHOO!!!)
• Q: Daylon is throwing up around 10 times a day and we aren't feeding him. It's a lot of dried blood, with some new blood at times. Why is this happening? A: I think he may have developed an ulcer. (After checking his G-tube diaper's drainage) That's a lot of blood for so far post transplant. We'll give you a bottle to take home and save a sample of his morning vomit before you come to clinic and we'll test the PH levels. I hate to scope him, so this will be our first step.
• Q: I want to get him off the g/j tube again, but to do that the nutritionist said he needs to practice eating. This is becoming so difficult for us, since everything we give him (on his good days) drains out from his g-tube site before he has a chance to attempt to digest it. Not to mention that then it has been mixed with stomach acid and burns his skin. What do we do? A: (stare for about a minute) I don't know. Let me talk to a few people and I'll email you when I think of something.
• Q: You told me early on that he has the T-cell count of someone who's one year post transplant. If the T-cells fight off germs and he's on CSA (an immune suppressant), does he now have a lower count? A: It doesn't lower the number of the cells, it weakens their ability to fight.
• Q: The Neurologist told us that Daylon will never talk again. What do you think? A: I know. He told me that too. I think that it's important to remember that it they were the people who told me that I (Dr. Tolar) should quit torturing Daylon and take him off life support. When we didn't and he was extubated, they said that he would only be able to partially move one side of his body and he would lie in a vegetative state his whole life. (Can I just comment here that I'm so glad he didn't relay all this to me at the time of. I could NOT have taken it.) We believe in Daylon and we have to continue to believe in him. (There's about 15 minutes of talking here which I will basically sum up by saying that he said he doesn't know if Daylon will ever talk again. The signs of speech should be coming on quicker than they are. He thinks that it is time that we consider other forms of communication, specifically American Sign Language. He gave me the name of a book by Oliver Sacks on raising a deaf child, that should help. He said that if he's meant to talk again, he will. He may be able to answer short replies ie: yes, no, school, etc. and have trouble with sentences....who knows. He can answer with a word on occasion, but I guess it also has to do with mouth movements and sounds. either way, there's still hope.)
• Q: When can we go home to California? A: He started off by saying that we'll decide in January, but then asked what I wanted. I told him I liked the Christmas idea he talked about a few months ago . The plan now is that he'll decide mid-December, but if we need to stay longer, then we can still go home for a week at Christmas and they'll help us arrange dialysis back home! Yay! I really, really want to go home and stay home in December. The biggest factors keeping us here are nutrition (he's at 23 ml/hour and needs to be at 48ml/hour) and his brain.

This wasn't in my notes, this is all him: Dr. Tolar and the Neurologist feel that it is in Daylon's best interest to have brain surgery to drain the extra fluid and blood.  When Daylon sits upright his face scrunches up and he fusses or cries more often than not. They believe that the fluid is shifting in his head and putting too much pressure on his brain. Besides preventing him from progressing in his milestones, it puts him at an increase risk for additional subdermal hemotomas and/or stroke. What they would likely do is drill into his skull so that the wounds are minimal. They're working on figuring out how to close the wounds without sutures, since they slide out. He asked for permission in contacting a neurosurgeon and said that if we disagree, than that's it. We have the final say. I really like that about him. I mean, I know we have the final say, but so often, it doesn't feel like that. If I say, "well, what ever you think" (and trust me...I have), he'll tell me, "You're the boss, so it's what ever you think!" Anyway, the point is, I don't know what to think. My first thought was, "go" but I'm scared. Brian and I both agreed it was okay to consult the surgeon, and I think overall, we know it's the right thing. Daylon is so uncomfortable and his life is in jeopardy. The poor kid wants to be near us, but doesn't like to be held very often unless it's like a newborn. I hate seeing him so miserable. He's happy laying down and some days he does well propped up, but those sitting days aren't often. How can we protect him too, from normal childhood bumps on the noggin or jerking stumbles? The idea of someone poking around in his head is unnerving to be honest and the risk for infection is already so high. Like I said, I'm scared.

  When I came home from the doctors, my girlfriend from church visited with her little girl. Her daughter is 10 months old and slept for a while we talked. When she woke up, I watched her lift her up from under her arms, give her raspberries on her neck, take off her sweater by tugging on the wrists of her sleeves and set her on the floor to play with my older four kids. She took off crawling and laughed at Caleb chasing her. I am genuinely happy that there are so many beautiful, happy babies like Annelise in the world, but for the first time in probably a year, it made me sad. I can't hammer down what I'm sad about. I guess part of it, is seeing what a kid 5 months younger than Daylon can do, that Daylon has never, ever done. Watching the ease that she and her mom could interact, especially after naptime, I'm sure is part of it too. Maybe it's jealously, but in my mind, jealousy has a kind of hostile connotation. I'm not resentful at all, just sad. I'm sad that I have to carry Daylon like a fragile family heirloom and that I can't hold him without a fluffy blanket between us. It makes me sad that if I snuggled him, his arm would press up against his body where his Hickman is and tear is skin or that movement could make his G-tube could come out. I'm sad that when I move him, I have to watch out that I don't step on or pull any of the cords coming off his body. I'm sad that every time I start to see the break that Daylon deserves to get, some other life threatening thing comes his way. I'm sad that Daylon has never crawled around on the floor laughing while Caleb chased him. To be completely honest with myself, I guess I've been a little sad since Bella died. It hit close to home. Bella and Daylon walked side by side through the trenches, when one of them would take a hit, the other one wasn't too far behind. Today my heart hurts. But that's today and I'm consciously reminding myself that that doesn't have to be tomorrow. The only way I've made it through the last 15 and a half months is by faith.  Have you ever had a trial that was so long and trying that you felt like you can't catch your breath? You have to push yourself through each day, without allowing yourself to think too heavily on the subject or else you might not make it? I guess that's where faith really comes into play. You know the great thing about having faith? I know that I am never given a trial I can not handle and I am never alone. I know that I can pray for guidance and comfort and listen to know what I should do and then trust in God. These new additions to our trials and Daylon's just gives us that much more of an opportunity to communicate with our Heavenly Father.  When I was first pregnant with Daylon I heard a quote that I absolutely love :

  "Come what may, and love it....the way we react to adversity can be a major factor in how happy and successful we can be in life"- Joseph B. Wirthlin

 I guess I should probably get off this blog and hit my knees. There are so many benefits to journaling this journey for you all. When I started this post, I was feeling so overwhelmed with life and to be honest, cried through part of it but now I feel hopeful and refreshed. Thank you  for being my "listening ear" and Daylon's cheerleader. It's such a comfort to know you're there for all of us.

  Before I forget, did any of you take my EB awareness challenge? If you have, I'd love to hear how it went! If you haven't, please talk to someone about EB, who knows? You may create the ripple effect. :)



A tribute to Bella, for EB awareness week: Daylon's fabulous socks of the day

Sweet dreams.

We met with Nurse Erin (Daylon's Primary Nurse) at Dairy Queen just before she took off for her move to Chicago! We'll miss you Erin! See you in June!