Friday, December 3, 2010

Day + 162...I think

Hey Everyone!
It's late and my eyelids are h-e-a-v-y, so I'll make this one short.
Daylon is doing pretty well. Remember how I said that Caleb was sick with the flu bug in the last post? Well, Daylon got it...we think. He's been so pukey the last two days. This poor kid can't keep even his medicine down, more or less fluid. He's also caught a cough, so not good. BMT isn't too worried about the vomiting (they were called directly to dialysis today when Daylon wouldn't stop vomiting and the Neuphrologist got concerned) because a bug's been going around the RMH house the last month (so we're told) and it's beating on the post BMT kids. I guess he'll be on TPN for a bit longer. His malnutrition is working in his favor right now! I don't know what we'd do if he wasn't on TPN already! :) 

Sorry they're blurry. He's a wiggle worm and I'm not a fan of the "flash"
  I know he's my kid, but I have to say it...Daylon amazes me. He will be so, so sick (the term "violently ill" comes to mind) and then the nausea calms down for a couple minutes and he's smiling and pointing and wanting to be cuddled.  He's really teaching me so much. I always felt like I was someone who "loved life", but Daylon knows the true meaning of the phrase. I'm so blessed to be his mommy. I have five wonderful kids who inspire me to be a better person. How lucky am I? Well, not lucky I guess, but blessed.  The twins turn three tomorrow and I've been doing a lot of contemplating today. Three years ago from right now, I was in labor 6 weeks prematurely and worried about what that might mean for the girls. Come to find out, being born at 34 weeks for twins is fairly common since the average uterus can only hold 11 lbs (see what you learn when you need to? LOL), but I was scared out of my mind. They had a rough first few days, but made progress each day and were out in about 3 weeks. It was an the type of experience that changes you, you know? It got me thinking about how merciful Heavenly Father is, and how if I had not experienced those three weeks beside Violet and Sadie, I don't know how I would have handled this BMT process...goodness!... even life raising Daylon! Isn't great that our darkest days and bring us light later in life! :)

Thank you for all your prayers! Let's pray this flu ends soon and he avoids another trip to the hospital.
   Happy Friday (officially)! Sweet dreams.
Keira's class made her a 'Build-A-Bear' puppy while she was out sick on a field trip. Sooo sweet, huh?


Gilda said...

Daylon is so cute he is so strong to keep a smile after everything he goes through. And your girls are just precious!

Anonymous said...

Sure hope Baby Daylon gets over the flu and that things will get better. He is such a miracle and so cute. He is such an inspiration to all. Jennifer, you and Brian have been thru so much and can still be thankful to your Heavenly Father for what you have and for your wonderful children. You are truly blessed and so are your children to have such wonderful and caring parents. Heavenly Father loves all of you and so do we. Baby Daylon and all of you are in our thoughts and prayers always. Tell Sadie and Violet HAPPY BIRTHDAY for us and that we love them. They are very special. Hope they have a real happy birthday, they are so beautiful. Tell them to eat a piece of cake for us to celebrate their birthdays. Take Care & God Bless.

All Our Love;
Myrna & Dwight CA

Linda said...

Hi Jenn: Thanks so much for the update. Sorry that Daylon caught the nasty bug that is going around. I'm sure that he will be fine, he really is amazing.
Hope the girls have a wonderful Birthday. Thanks for the pictures, they are the best.
Take care and Keep the Faith. Love and Hugs Leah's Nana

Jess Edling said...

I remember you being in labor on my wedding day and all of us thinking we'd get to go visit you in the hospital after the temple! I also remember being lucky enough to be there the first time you finally got to hold the twins after them being in the NICU for so long. Happy birthday to two of my favorite girls! Oh, how I miss them (and YOU but that goes without saying ;) ).

Poor D and his flu. I hope he kicks it soon! I love how smiley he always is. He always was, even when he was on all those painkillers before BMT and still hurting, he'd always smile for us.

Love you guys. Can't wait to see you! I have a countdown on my fridge for when you come home! LOL!

Mom to Many said...

What a sweet little guy. I am so glad he loves life. What a great example he is to all who *know* him.

I am so glad your girls have done so well. I remember the terror I felt when my water broke at 29 weeks with one of mine. I could not speak in full sentences because I was so immersed in my thoughts. (I had read way too much about prematurity and was so worried.)

Happy Birthday girls!

Mike and Dejah Morris said...

Happy Birthday to Violet and Sadie! I can't believe how much Daylon has changed since you guys have been there. I hope he gets over this flu soon!

Brenda is SO Blessed said...

happy birthday to those two wonderful girls. Daylon looks soooo good. What a blessing brenda


Daylon looks incredible and so happy! What an amazing little boy he is! Thanks for sharing your thoughts and insights, I like what you said about our darkest days bringing us light! It's true and you'd never think that while in that darkness!
Take care and hope your Daylon and the rest of yoru family kick this flu bug!

The McLaughlins said...

I didn't get a chance to comment the other day when I read this post and I just wanted to say that I LOVE the pics of Daylon!! He is such an adorable little guy and he really does light up my day reading about him and your little family. I love to see his smiling little face. Too precious!! Lots of prayers still coming your way.

Lots of Love,
Amber McLaughlin, CA

Dana M. said...

I don't think I’ve commented on your blog before (even though I've been reading since right before ya'll started the transplant), but today, I wanted to share with you a small incident that happened to me last night that brought Tripp, Jonah, Bella, and all the other EB babies I read about each day to the front of my mind. I just wrote this on Tim’s blog (you know, because he just blatantly told his readers to comment – that he wanted to hear from us! Haha!) but I also wanted to share with each of the other EB parents and will be emailing/posting this to each of you today.

"Hey Tim - Kinda off topic, but I wanted you to know that I thought about Bella (and Daylon, and Tripp, and Jonah, and all the other EB babies) last night. As I was taking supper out of the oven, I accidently bumped one of the racks with the back of my finger...just an instant, but it burned. An hour later, I had a tiny (microscopic) mark/blister on my finger...and it hurt. Then an hour later I got in the shower and as the water went over my hand, instantly my finger hurt and I pulled it back and thought "Ouch! That water burns on that blister!" Then it hit me...this is only a tiny, tiny amount of the pain that Bella, Daylon, Tripp, Jonah, Sam, Rafi, Leah, and all the other affected by EB feel each and every day. How DARE I even think about the pain I felt when these precious babies suffer day in and day out with amounts of pain that I can't even dare I complain that my finger hurts? I stood in the shower and held my hand in the water and as I felt that little sting of pain I prayed for each of these children and prayed that God would ease their pain. That He would heal these children. That he would bless them and the loving parents that so tenderly care for them day in and day out. And Tim, I don't know if this appropriate to say or not, but I couldn't help but thank God for taking sweet Bella and Elle, and Leah away from their pain and suffering and for bringing them back home to live with him. I can't imagine the amount of suffering these precious angels endured.

All because I slipped while taking supper out of the oven...all because parents like you share your daily trials and the pain of your children...I am much more aware of our health and much more Thankful for it.

I pray for peace for you, Ang, and Ali.

Dana in MS"

I know you are aware of all the prayers that are sent up each day, hour, and minute for Daylon, but I wanted to personally tell you that at 7:55 pm CST last night, from my little bathroom, your names were spoken to God. And I know He heard me…even if I was in the bathroom.

Hope you have a wonderful day!

Dana Mordecai

Angelique & Ali Ringgold said...

Hi Edlings! Ali asked me to post a note from her. She wanted to say "hi" and let you all know how much she misses you all!