Sunday, October 31, 2010

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!


Anonymous said...

WOW....this post really hit home to me in so many ways. The year I had Kelly, I remember dressing her up on Halloween. That was her one an only Halloween with our family, such a bittersweet memory. Your kids all looked SO adorable in their costumes. I hope Caleb is better! Know that we share in your faith and in your journey and we cry and celebrate each event that arises. Our prayers are with you all daily. At my BUNCO group last week, the hostess gave everyone a pair of Halloween socks. That was my cue to share about EB with the group....the fabulous socks of the day! We talked about Daylon and about Bella and we shared a group prayer for you all and for the EB families everywhere. Take care of yourselves and thank you for keeping us posted! Love to you all, can't wait to see you in December! Tina Zalanka and family

Amy F. P. said...

Wow. Daylon's Halloween picture this year compared to last year is amazing. What a miracle. I really hope you'll be able to go home for Christmas. I know how nice that would be. We continue to pray for Daylon and will pray that you will know what to do regarding brain surgery. Hang in there. You are an amazing mother.

ElleAuvil said...

Hang in there. I don't think you would be a normal person if you didn't occasionally struggle with feelings of sadness or jealousy over what you don't have with your own baby. There is nothing at all wrong with having those feelings. I will pray for you all as Daylon continues to struggle, but at the same time I am rejoicing at the fact that your precious little dinosaur is HERE and smiling for another Halloween! Your road will keep on going, and parts will be hard and rocky, but I pray that the smooth and easy stretches will lengthen and provide you all with some comfort.

Nancy said...

I'm so happy to hear how Daylon and ya'll are doing. I was going through Daylon withdrawals when your computer was broken ;).

Thank you for sharing your faith with us! You're both doing an amazing job and are an inspiration. I remember reading something about Job -- that among the many trials he had to endure, the length of his suffering and loss was in itself a trial of his faith. Enduring something heartbreaking for a short period of time, while difficult, is not the same as enduring it for an extended period of time. So, again I have to say ... you're doing an AMAZING job! You ARE an inspiration! Heavenly Father truly is aware of all of you and he knows how strong you are. Thank you for sharing your miracles with us. :)

Lisa said...

Seeing Daylon in his costume made my day!

I'm sad that things are so difficult right now. Sometimes it seems like kids like Daylon just can't catch a break...when it's not one thing, it's another. It is unfair that children, and their families, should have to endure so much. But there is a reason Daylon is your son...he was born into the best family possible. Try to give yourself a break and just validate your's ok to be sad, mad, etc. The situation is a tough one and you handle it beautifully.

Well wishes from MN

Karen said...

It is amazing to see the changes in Daylon's face from last year's photo. I feel privileged to travel with you in this journey--your strength, (and we know the Source) is amazing.

May the Lord bless your family more than you can ask or imagine.

Karen in Canada

Kendra said...

I did take the challenge this week. Melanie, Lacey, and I ran a race for EB on Saturday. We wore our shirts with Daylon, Bella, Jonah, and Tripp on them. We had many people at the race ask about them and EB. Then when we went out to breakfast after the race we told many more people, then again I told more people when I went to the Halloween festival in my town. So many people loved the shirts and wanted to know so much about EB. It's great that we can get the word out.
Daylon is so cute and I hope that things turn around for him soon, I think about him and your family daily.

Annalien said...

I wish I had the right words to make it better for you. I have just been on Tripp's website and read the post of dressing changes and I have SO much respect for you "EB" parents! Especially since you seem to maintain such a positive outlook despite the terrible heartache that must go with the territory.

Please know that I will continue to pray for you all; that you as parents will know which decisions to make in Daylon's care, for wisdom and empathy from the doctors and that your gorgeous boy will fully heal. God bless you.

Anonymous said...

I LOVE that he was a Dinosaur!! Reminds me of the videos of him roaring :) I can understand your concerns that he isn't talking yet, but my little one is only saying one word so far. He has had a lot of "asleep" time too, so that makes for fewer interactions with spoken language. Signing is a great idea and I am sure the other kids will love the occupation of learning it too, but don't lose hope- my pediatrician keeps telling me that some kids speak faster than others (while I'm freaking that she isn't talking yet) and as long as she listens intently and appears to understand things, we shouldn't worry for a little while. I mean she builds things with legos for crying out loud! She's smart! :) Some kids just need more time to talk I guess- Hang in there! And HAPPY HALLOWEEN!!

Anonymous said...

I just want to let you know that I took your EB Challenge :)

I introduced my kids (5 and 3) and my niece (7) to Daylon, Jonah, Tripp and Bella. We talked about Heavenly Father making us all different and what EB is and looked at pictures from blogs. I related the idea of their toys needing extra special handling and care when all they wanted to do was play with them and hold them and cuddle with them etc. (I really hope that doesn't offend you, I just had to put it in terms the kids could understand :) )

I'm guessing little kids aren't who you meant by this challenge, so I also discussed EB with coworkers and several friends. I work in a specific disease related field trying to find a cure, so all of my coworkers loved hearing more about BMT in relation to EB, and attaching such sweet faces. Several of my coworkers have started following y'alls blogs.

The McLaughlins said...

Jen and Brian,

I am so glad to read all of that good news that Dr. Tolar had for you about Daylon. I have been praying every single day that Daylon doesn't have GVHD and that he will not need a kidney transplant. Although I know Daylon has a way to go, I am positive that God is listening to my prayers. Daylon is such a special child.

I loved all of the costumes. Keira's was so creative. Did you make the costumes yourself? If so, you are just so darn creative. I absolutely loved Daylon's dinosaur costume. Priceless!! There is such a huge difference between this years Daylon and last years Daylon. His skin looks so good now.

Thank you for being so candid in your feelings Jen. I can only imagine how hard it must be for you to see other healthy babies(even though you have your older kids) being able to crawl around and play and be held by their mommies. I can actually understand that heartache. When I was 17 years old I got pregnant with a beautiful little boy. I was a senior in high school and Laurel class president. It was a very difficult time for me. I became closer to God then I ever had in my life prior to that time. I prayed constantly. My Heavenly Father confirmed to me thru prayer, that this child was not mine and that I should place him for adoption. Even though that was the hardest decision I have ever had to make in my life, I didn't feel alone. My Heavenly Father carried me and guided me to my sons family. After he was born and he'd been given to his family, I could barely stand to see other babies. It was just too hard for me. I cried all of the time. I have never regreted my decision to place him for adoption but that doesn't mean it didn't hurt.

Stay Strong. You are great parents who have faith in the Lord and only want whats best for your children.

Lots of Love,
Amber McLaughlin, CA

sharon kaye said...

Jennifer, I read this post a few days ago, but didn't have time to respond. But, the things you wrote have stayed on my mind.
I really don't know how you have handled everything that you have had to bear. I know the Lord is blessing you.
Once when we were going through a trial that seemed to last a really long time, I was talking to our stake president. (This is after we had moved from California the first time.) This stake president was also going through some trials and he said, "I know that the Lord doesn't give us more (trials) than we can handle, but sometimes I wish he didn't have quite so much confidence in me." That made me laught but I could relate to it. I'm sure you can too. This I do know--Heavenly Father is very aware of you and your family and Daylon. He loves you all very much. He only allows you to have these experiences because he knows that in the end "all things will work together for you good." I wish I could give you a big hug. You all are in my prayers daily.

Anonymous said...

Hello there, what a wondeful update despite all the ugly things that lay ahead. Remember Daylon doesn't miss crawling etc.....having never done it he won't miss it. Of course it is normal for you to be sad...give yourself a break. You are the most amazing mother I have ever heard of and I hope once this chapter is over and you all all back in Ca with a healthy and healing Daylon you will get a chance to write a book. You inspire me daily as does Daylon and your whole family. I wear Daylons tshirt (from the walk-a-thon last year at Eleanor Roosevelt High School. My daughter and son-in-law work there) to work almost every Friday and Daylon is prayed for by at least one extra person as a result. I LOVE to hear "Who is Daylon"? I can go on quite a lot and if you were to hear me you would think I had just left your side!!! I can talk or so I"ve been told!!!
God bless you and stay strong. God bless baby Daylon and grant him good healing and comfort.
Good thoughts and prayers going to you every day.
Bernie, from California.

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