Monday, June 3, 2013

Update on Daylon

 Hey Everyone!
Strawberry picking last weekend! Getting things crossed off our Summer Bucket list!

 Thank you all for sticking with us! It's been about a year I think since our last post due to my lack of computer (I love it when they crash taking my photography with it. Boo. ). My computer is still down and out and will be for the next while but I'm borrowing. :) I've tried to answer the emails on my phone as they come in, I hope I haven't offended anyone with our absence!
Easter in Boise at the De La Cerdas! Cousin time! Daylon loves to play with Addison!

  Last May Brian and I really felt that Heavenly Father wanted our family to begin a new journey in our lives, so using a HUGE amount of faith, we sold our house (I'm still heart broken, although the profit on it, helps a little) and moved to Idaho where Brian was accepted to BYU to continue his education, only this time majoring in Civil Engineering. I can not believe how many things needed to and have fallen into place for this to happen in our lives. We have been very blessed, once again.
   The scariest thing about the move, was leaving the convenience of a nearby children's hospital and the latest in medical science that California has to offer. Our nearest hospital is almost 3+ hours away in Salt Lake City, Utah. When we made the decision to go, Daylon was being seen every other month at CHOC, but thankfully, by the time we left in December, he was finally moved to annually! This is such fantastic news for us! It not only saves us from tons of driving, but most importantly, it means Daylon is healthy enough to not need constant care from the BMT team! He's still seen fairly regularly by specialist for other issues, but as far as the transplant is concerned, he's doing very well.
   Brian, Daylon and I went to Minnesota in November of last year to see Dr. Tolar and the whole crew of doctors and medical professionals at the University of Minnesota. I know this sounds crazy, but we had such a wonderful time!! It just melted my heart to watch Daylon's nurses and "friends" light up when they saw Daylon. He was walking, talking, giving was adorable. So many people just stood there with their mouths open at our little miracle boy. I am positive that he would not be here today if not for the out of this world care that he received in Minnesota. We are so thankful for them! Seeing Dr. Tolar was especially exciting for us. Daylon's blood draw showed that he is 100% engrafted with Caleb's cells in his blood and his skin biopsies showed an increase in donor cells as well! Hearing this kind of news feels kind of like exhaling for the first time in a week. It is such a relief! Dr. Tolar also gave us 2 bits of exciting news that we can't wait to share with you all, but we need to wait until Dr. Tolar makes it public before we can share. After all he's done, I figure we can definitely do that!
   A stricture was found in Daylon's esophagus (the passage way was only the size of a pin hole, so it's no wonder he was getting sick constantly) and we were also able to have it dilated while we were out there. While it's a temporary solution to the problem (we were told that he'll probably have to have it done 10 or so more times before it's permanent) it has made a great improvement in Daylon's life. He's able to drink about 4-6 oz before vomiting and he's also able to eat go-gurts, mandarin oranges, rice and other soft foods! He feels like such a big kid and it just makes my heart soar to see him so proud of himself.
Despite being blind for a nearly 2 week with corneal abrasions, Daylon loves visiting So Cal!

   Due to the emergency dilation, we had to cancel his neuro psych evaluation. I was really disappointed that we couldn't sneak it in some other time while we were out there but the test is 6 hours long and our schedule was packed. So, that being said, I have no idea what his mentality is right now. My guess is about 2 years old somewhere (he'll be 4 in July). He can do simple puzzles, sing his ABCs, count to 12, name animals and speak in basic sentences (ie: "Me want more juice please", "Daddy's home!", "Mommy, I need band-gees (bandages)!". He still struggles with his colors (you can remind him in the morning and he remembers for the day and then forgets them all by the next morning. It's really weird) and has trouble recalling. When he speaks he often pauses and looks heavenward while he tries to think of the word he wants to use (often nouns). From what we've heard from doctors, it's all related to the brain damage he suffered but he continues to improve all the time. There are little things that he does that really makes us believe that with a few more years of therapy, his mind will be as sharp as any other child his age. I have to say, Daylon is probably my funniest kid. He has so, SO many facial expressions! He kind of reminds me of a cartoon. Is that bad? Hahaha! He also has caught on to sarcasm quicker than my other kids have and around here, it's a way of life! :)

   Me: Daylon, lets practice our ABCs.
   Daylon: No, thanks. Me watch TV.
   Me: Letters first and then TV
   Daylon: Fine. (to the ABC song) Blah, blah, blah, blah, blah, blah, blah. OK.  Now TV. (cue the giant grin)

   As far as his skin; it's in pretty great shape right now. The bottoms of his feet are still a mess, mostly because we just can't shake a fungus infection that he's had for two years or so. As soon as it starts to clear up, his foot begins to heal, he starts walking more, then they blister and tear and the fungus goes crazy. It's a vicious cycle. We got a wheelchair for him a few weeks ago and he loves it. He only uses it when we go out so that he doesn't have to walk and we don't have to carry him. To our surprise, he's even learned how to push himself!...and for whatever reason, it's not tearing up his hands!! Yay!
Fun at the Watermelon Festival in his new wheels!

   Daylon is very excited to start preschool again in the Fall at our elementary school. He got into the Special Ed program there. He fellow classmates are non-violent and fairly delayed, like him so he fits right in! He's teacher says he's friends with everyone and very social. Some of the kids have a mentality of less than a year old, so he will try to help his friends by bringing them toys. I love his heart. He is so good natured. Actually, I don't know if some of you remember, but we were having issues with people staring at him and calling names, pointing, etc when we were in public. I was so upset with the way people treated him that I have to admit, it really got to me. He has had such a great attitude about everything his whole life and over the last year, he has just let all of that roll right off his back. He used to hide his face when others were unkind and now he smiles at them, waves and says "Hi! Me Daylon." I have seen so many disgusted faces turn into a smile because this. Daylon has chosen to treat them with a kindness that they have not given him. He has been a great example to them, and to me. He reminds me to "kill them with kindness" and to not loose faith in others.
   Brian and I continue to feel the blessings of being the parents to such a special little boy (and his 4 wonderful siblings). Thank you for your continued prayers and support!
Helping Daddy get the flag up for Memorial Day!


Traci Elizabeth said...

Awwww!!! Such a sweet little guy! ! We will definitely have you guys over once we get into our new place!

Lynda Whitney said...

So thankful... Love your update Jennifer, a blessing that our prayers have been answered.
Much Love ❤
Lynda Whitney

MomtoElderMunson said...

Thanks Jen! I know you are up to your shoulders in life.
I loved hearing about Daylon's reaction to others. What a precious little boy. Sometimes the little ones have so much to teach us about life.
I am so happy that your family is doing so well. You truly have made really great lemonade out of some lemons.
Thanks for your great example and perseverance! You and your husband are doing a great job raising your sweet family!


Mom to Many said...

Oops, I was signed into my other account.


Amy F. P. said...

This update made me smile. Thanks! What a miracle Daylon is in so many ways. I'm excited to see what the future holds for him.

sharon kaye said...

Thanks for the update. I am so glad to hear that Daylon is doing so well. It was wonderful to see pictures of all your children. I didn't know you had moved to Idaho. I hope all continues to go well.

carla said...

I've been thinking about him lately. He looks like he enjoys life, and looms so happy.

Umbrella Strollers said...

I've read your blog post and it was amazing. I'll visit your blog again to read more article :)

Julia said...

Thank you for sharing. How wonderful to see how well Daylon is doing!

Anonymous said...

Happy to read that all of you are doing well and that Daylon has improved. Thank you for taking time to share. sg-KS

Anonymous said...

Thanks for the long awaited post! Glad to hear Daylon is doing so well!


Anonymous said...

I am so curious to hear the news! I just found your blog from another EB story. And now it sounds like you are practically my neighbor. I live in Idaho falls.