Friday, April 27, 2012

Getting ready for Minnesota...

   A lot has been going on since my post last month!

Easter and easter pictures...

 
  About a day or two after that post, Daylon was in the toy room playing Mega blocks with the kids (Spring Break) and I left to go make out address labels. I was gone MAYBE 2 minutes...seriously, I hadn't even finished the first label, when I heard Daylon screaming...from the backyard. Long story short, he snuck out (I had the screen closed but the sliding door open) and crawled up the step like retaining wall and then fell off. He only fell maybe 3 feet and onto grass, but his arm and the tops of his feet caught the bricks as he fell. It took the skin off his arm from his armpit to his wrist and the tops of his feet, especially his toes. Needless to say, I felt well, let's be honest feel horrible. He was such a mess. When accidents happen to my kids on my watch I can almost hear the sound of my name being written on "The Worst Mother of the Year" award, but it happens to my EB kid, the guilt can seriously consume me for a couple days. He was obviously in tons of pain, but he managed like a champ...as always. He's such a tough little guy. Within 2 weeks, his toe tops were as good as new but his arm has taken longer.  As it would start to heal, he would tear down his bandages in his sleep and scratch it until it was bloody again. This happened every night for about 2 weeks no matter what we tried. Finally after a couple rough nights in our bed with us, he made it through the super itchy patch. It's been about a week since I took off his wrap and with a very few exceptions he's done pretty well. It's not entirely healed, but it's looking better. It's amazing to watch Caleb's cells and new skin take over a wound. The skin comes in a bit "different" but it comes in quickly which is wonderful.





   As far as health, his check up last month showed that things are about the same, which is good, PLUS, drum roll please.....Daylon GREW!!! This poor kid is such a little thing for his age, but he's up 1/8 of an inch! Hooray! We'll take it!

  Daylon's story was also featured in a wonderful blog called, This This Little Miggy Stayed Home .
The author of the blog is a lovely lady named Miggy who is a special needs mom herself and every Friday she features: a new special need child, their disease and their family's story. She's on such a valiant mission to educate the world about childhood diseases. If you have a minute, pop on over to her blog and check it out!

We were also able to enjoy our first family (non-medical related) honesttogoodness vacation!! We went to Utah, which by no means is Hawaii, but we had a fabulous time (Utah is Spring is beautiful)and got to see so many family and friends and we were gone for 8 whole days! Plus, we were able to attend my little sister's graduation from BYU's graduate school program! We're so proud of her!

Daylon had boo-boo eyes this day and it made it hard for him to look up







  
  Our next trip will be in a couple of months to MINNESOTA! Daylon's 2 year anniversary from transplant is coming up on June 24th!! Can you even believe it!? We're so excited to show off our sweet boy to Dr. Tolar and his team! We've continued to stay in contact with him via email and phone, but I know he's super excited to see Daylon in the flesh! Last year at this time, Daylon wasn't even 18 lbs and was functioning at a 13 month old mentality. There are so many wonderful people who have helped us in this journey from Minnesota and we hope we run into them all! So far, our insurance is being a pain about this follow up visit (what else is new) but I'm sure we'll wear them down. :)

I love my cute boys



  Well, that's about it from our little neck of the woods. Daylon has come down with a bit of a respiratory illness the last couple of days, but so far it's not been too serious. He just has a nasty cough and his breathing "junky". Please pray that it will remain something that can be dealt with out of the hospital. We like to avoid hospital stays if we can!

   Thank you all for your support and love!

   Love,
Jennifer

12 comments:

Aviles Family said...

Yay an update! I cannot believe its been 2 years already. He is truly amazing. He has the most infectious smile I've ever seen. You can't help but love him! You look great in your family pictures too. :) love ya!

Michelle said...

What an eventful two years it has been.... In some ways it is hard to believe two years have passed and in others it seems like just yesterday when all the preparations were being made. I will never forget the look of joy on Brian's face the day he told me you were in the trial for sure. So thankful that things have come so far! Love you guys!

Mom to Many said...

So glad to read your update!

Sara said...

Love this update...I'm dying to meet this awesome kiddo and hIs super siblings!!!

sharon kaye said...

Thanks for the update. Yeah for Daylon. I love all the great photos. I hope I get to see you next month!

Jan's Blog said...

I love seeing that you have posted and hearing the news of Daylon and the family. This is a wonderful post, with wonderful good news...even the fall. For Daylon to be healing like that is simply miraculous and proof in my mind that prayers are still be answered, not to take away from his terrific medical team. Thanks for the update. As always you are all in my heart and in my prayers.

Bella's Blessings said...

Hey, GREAT to hear about a much deserved family vacation! SOOOO happy overall and can't wait to see y'all in a couple of weeks!
Tim

Anonymous said...

Yay for a Daylon update!!!! He is such a beautiful kid! I LOVE the picture with all the kiddos, everyone is growing up so much!

So glad to hear he is healing from his fall, cannot imagine what a difference since transplant!

Will be excited to hear an update after your 2 yr checkup. Remembering how bad things got and to see him now, he must be such an encouragement to the whole team in MN!

Loving your boy as I pray for him from Waterford, MI

Kim M

Anonymous said...

I LOVE reading how well Daylon is doing!! I can't believe how big the rest of the kids are getting either. I remember them all from the RMH 2 years ago, Molly just adored the girls:) I hope your visit to MN is full of great news!
Take care!

Julie Williams
www.caringbridge.org/visit/mollywilliams

Anonymous said...

So glad to see your post, We have been wondering what was going on with Daylon and the other kiddos. Daylon is looking really good and the other kids are growing so fast. They are beautiful. So glad you all got to take some vacation, it was a well needed one. Daylon is so amazing and so strong as are all of you. You are such awesome parents. The pictures are great of the family. Surelad you got to go to Emily's graduation. We are all so proud of her, she has really accomplished so much. Would love to see all of you real soon. You are always in our thoughts and prayers and we love you.

All Our Love;

Myrna & Dwight

Anonymous said...

Hi, just checking in to say I'm praying for your family as you get ready to head to MN! Can't imagine how much organization is needed, but having watched you over the last 2 years, pretty sure you got this one!

Safe travels and looking forward to your updates.

Kim M
Waterford, MI

Anonymous said...

Hi was wondering how your family are doing. Is Daylon doing okay?