Thursday, September 2, 2010

Day +70: Miracle Milestone

Sorry, it's been a few days. My excuses are lame, so I'm not even going to try to explain. :) Enough about me, lets talk about Daylon! Today especially has been packed full. Let's go over the good and the bad.
 The Bad:
 Daylon's body has sprouted a rash this evening. I took pictures and sent them to Dr. Tolar, so we'll know more in the morning. The fear is 'Graft Verses Host Disease' or GVHD.  It's where Caleb's cells attack Daylon's body because it recognizes it as foreign. It happens in 30% of BMT and is usually noticed around day +30.  We're a ways out from there, but it could still happen. I'm not really sure what to think. Daylon and Caleb were identical matches, Daylon's a baby, and Caleb is older than Daylon but not old, all work in his favor to not get the disease. We'll see.
 The other bad thing is that tonight when Daylon started to fuss, I went to get him out of his crib and I bumped his head on the monitor's probe. Yeah, Mother of the Year, right here. It took off several layers of skin and bled. Now it's this shinny, fleshy spot. I feel awful. It happens, I know; Still, I hate causing him pain. He's in enough already. I was so concerned about watching his IV lines (his hickman isn't sutured and on the verge of coming out) that I forgot about his head. Well, it gets worse. I sat with him on my bed, examining his wound and I forgot to watch his g-tube (it started to come out earlier today).  The next thing I know, my legs all wet and when I look down, I see his g/j tube is on the bed. The. Whole. Thing. I know. From there, I spent the next hour applying pressure to the open hole, waiting for the resident to find a grown up who knows something about EB and g-tubes. Sorry, that was a little harsh. This girl had two modes though: slow and stop,  and is just in her second week of BMT residency. Anyway, they ended up sticking a urine catheter in his g-tube site to keep it from closing (the hole closes super fast and he can't go under for surgery without being intubated again and Dr. Tolar isn't budging on that one. Daylon will not have surgery if he can help it). He has an IR appointment tomorrow to have it replaced, while he's conscious.

The GOOD:




Our son is back!!!!!!!! I have no clue what happened but he woke up post dialysis a new man baby! He's been smiling at everyone, waving "hi" and "bye", reaching. Get this, out of no where, he suddenly has coordination in his left arm and hand! He's grasping no problem, he even helped Andy, the RT hold his mask for his nebulizer treatment! He's cooing and babbling and I got him to say "hi" and "mama" again! He's done the short little yell a few times like he used to, to object and started shaking his head "no". He's not 100% his old self, but he definitely seems like a baby. He's happy! Do you know how long I've been waiting to see him happy?  :)  It was so hard at times to see him just stare blankly, or to pick him up and talk to him and know that nothing was registering with him. We knew he was in there, but he was so far away. You know that story of Helen Keller? The little girl who was born blind and unable to speak? The story that is so full of hope and miracles? At the cost of sounding un-American...I hate that story. I always have. It's a wonderful story, but the thought of not being trapped in your own mind....she can understand, but not speak or even sign because she can not see. As a kid, I read the story and felt sick. One month ago, Brian and I sat down with doctors and were told we would likely have a "Helen Keller" of our own. A little "Helen Keller" who would not be able to move his right side, more than likely be mentally retarded and have EB (for at the very least, the next several years). The thought is more than I can bare. I cried and obsessed over it for a few days, but then I knew that if I were going to help Daylon get through this, I would need to be stronger than I was acting. I pushed the thought from my mind, and everyday, every minute sometimes, reminded myself that all things are possible through Him. We needed to trust in God and nothing else. Today is a miracle. I have a testimony that God lives and he loves us. He may not always answer our prayers with the answer we want, but he does answer them. Daylon has a horrible disease that no person should ever have, but because he does people all over the world know who he is and love him. Everyday we are all united in prayer for him and the other EB children and we are able to witness miracles and God's love. We are closer to our faith and perhaps, closer to our families. Thank you for following Daylon's journey. You have helped us through our darkest days and I'm so happy to see the sun shine. We love you. Sweet dreams.

21 comments:

Anonymous said...

It's so wonderful to see (and feel) that smile! God bless you all. Keep up the good work Daylon!! God is GOOD all the time.

The McLaughlins said...

Jen,
I know you feel terrible about accidentally hurting Daylon today, but he knows you didn't do it on purpose and he will get better. It happens to all of us.
I'm so excited to see such GREAT pictures of Daylon today. He is getting better so FAST! A miracle is taking place right before our eyes. How AWESOME! Thank you for sharing this wonderful miracle with us. Lots of love.

Take Care,
Amber McLaughlin,CA

sharon kaye said...

Thank you for sharing these miracles with us!!! I love the pictures!! Yay for Daylon.

jardinera linda said...

Welcome back, Daylon! We love you

theartfulgardener said...

Sending love and prayers for Daylon and your family from Cologne, Germany. I'm so happy that he's smiling again :) Laura V.

Pati @ A Crafty Escape said...

Love that sneaky smile!!!

Linda said...

Best update yet. I just love that smile. You must be so happy with the way Daylon is progressing. God is So Good. You are truly blessed. Love Leah's Nana

Mom to Many said...

Jen,

It is expected that your posts will be spaced. I expect you are focussing more attention to your, "Hey I am home." baby instead of having as much to focus here. No apologies needed. Anyone who loves Daylon or you will understand.

I am so happy that Daylon is progressing so well. I loved seeing his little toothy grin.
What a blessing. He is returning to you.

As for the GVHD many prayers are needed.
You'll be in mine. Yet another ripple in the pond. I am so sorry that this is a concern.

Your family has been tried, but very blessed.
:o)
Cheryl

Gilda said...

My heart is so full of joy for you that you are seeing your Daylon again. I know how hard it feels to see your baby not acting himself. And god is good your right about not answering the prayers just like we want but he sure does answer. So glad to see your faith leading you and making you strong for Daylon. Keeping you in my prayers still as always.

CrsLeigh said...

Here's praying that the Good continues and the Bad is over soon! You are all such a testimony of what God can do in our lives. Take care!

Katherine @ Grass Stains said...

Rejoicing with you in Birmingham!

Amber said...

I can imagine your horror at being told the scenario you despised--Helen Keller--would be your son's life. Your resilience is amazing! It is great to see a smile in his eyes and hear of the miracles that are occuring.

The Cohen's said...

Loving the GOOD news of the post! God knows your heart and your fears, and he will provide. I'm so thankful that Daylon has woken a little. He's in my daily prayers, your family is always in my thoughts.

Maria B. said...

I'm praying for your son and other children with EB. And I have been in that situation, too, of unintentionally "hurting" my child: we had a power outtage and in the process of me moving my son from his hospital bed to our bed I almost pulled his g-tube out so I hurried to put him back to his bed and bumped his leg on the bed rail causing a fracture. BAD, huh? I've forgiven myself about it. And my son has recovered well, THANK GOD!

HeatherD said...

This California girl has been checking Daylon's blog almost every day since I moved to Hungary two weeks ago, and will continue to do so. This is definitely one special little boy with support and love coming from all over the world.

BRIAN AND BROOKE said...

I love the title of this post!!! I am just crying because I am just so filled with JOY for you that you were able to see Daylon happy!!! A mother always want s to see their childeren smile!!(especially after everything Daylon has gone through) He is waving, saying Hi and mamma!! OH what a great day for you JENN!! What a true blessing !!!!! I am so happy you have your little boy back...and that the doctors were WRONG.. AGAIN!! Should we start to tally it up? he he

I am praying the rash is nothing to worry about!!!!!!!! I am sorry about his head wound, it happens Jenn!! At least you know he will heal faster! The G tube sounds like a mess! Glad they are replacing it tomorrow.... I hope it goes well with him conscious!! Praying for our little fighter Daylon !!

Love the pictures!!! Just want to snatch him up :)

Anonymous said...

It is great to see Daylon's smile. I am so very happy for you. I continue to keep Daylon in my prayers.

Bella's Grandma Carolyn

Patrice said...

HOORAY! Welcome back, Daylon. We've missed you little buddy. You truly are a miracle, and we thank God for you. Thanks for giving all the JEBers out there some hope! You're our HERO! LOVE YOU LITTLE BOY. I can't wait till you and Jonah can someday meet and play together.

Bella's Blessings said...

Yay Daylon! Welcome back, buddy! Your family has MISSED YOU! Keep showing those brain docs who's in charge! I LOVE IT!!!

The Jones Family said...

Great news about your son! Heavenly Father is blessing your little boy and your whole family. We will keep praying for you all!

Anonymous said...

I remember reading your blog post and you mentioning your toshiba laptop was down again. I was reading this in the OC Register today and thought I would share:

Irvine-based Toshiba America Information Systems Inc. announced last Thursday the recall of 41,000 Satellite T135, Satellite T135D and Satellite ProT130 Notebook Computers. Toshiba has received 129 reports of the notebook computers overheating and deforming the plastic casing area around the AC adapter plug, including two reports of minor burn injuries and two reports of minor property damage. The computers, made in China, sold at electronics stores and other retailers nationwide and online, including at Toshibadirect.com, from August 2009 through August 2010 for between $600 and $800. For more info, go to CPSC.