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 hugs...it 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!

Dance Central 2

  We've had an XBox Kinect for about a year now and Daylon has never cared a moment that he was missing out on all the fun...until last week. This kid has developed a full on LOVE affair with Dance Central 2.  Keep in mind, it's hot here in Southern California these days and his feet have just become a fester of blisters over the last 2 weeks which has kept him from walking. He doesn't really walk anyway, but lately he crawls 100% of the time. That is, until DC2 is on. He loves himself a good tune. His spastic dancing in the car has been cracking us up for months and he can get a slight peek of that here! Enjoy!!

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

Welcome Spring!

 
  Happy Spring, Everyone!

  I wanted to give you all an update on our little guy.

WHAT.A. HAM!

  Daylon is doing well skin wise. His face looks the best I've seen in months! With the exception of his feet, he's still unbandaged (side note- they're actually so bad today that he can't stand). Daylon immune system has been strong enough to introduce him to animals and our puppy loves to nip at him.  Honestly, it's driving me crazy because I'm so scared for him, but all in all he's done okay with it. He does have lots of cuts and a spot on the back of one of his cafes that's about 3 quarters (the coin, not the measurement)  in size, but Daylon LOVES the puppy. He's always calling for him and if I kick the puppy outside, Daylon will sit by the sliding door waiting. Animal Friends of the Valley gave him to us to help with Daylon's emotional/mentally healing and, like I said, he loves his puppy!
   Earlier this afternoon, Daylon climbed up on a step stool in the bathroom and slipped off. His chin hit the counter and I was prepared for the worst. The impact did take off the first few layers of skin and it bled a little, but nothing like I was expecting. We just ride that cell roller coaster and sometimes he's doing great and other times, it looks like he's fallen off the roof. We're still hopeful that in a few years time, this can be a cure for him altogether.

Man, I love this happy boy

  As far as Daylon's insides, between the aftermath of the chemo treatment and having the Herlitz form of EB we're still fighting a struggling battle. Daylon has been able to limit his throwing up to when he: coughs, cries or laughs too hard. This has been WONDERFUL news for us!!! One, I don't constantly reek of puke :) and two, he's finally gaining weight!! He's up to 28lbs and he's grown 1/4 of an inch for the first time since November 2010...Yes, you read that right, 2010. We learned early on with Daylon that things are all give and take. Soooooo, with that weight gain he grows and when he grows, his already shrinking kidneys, become even smaller for his body. We have this kidney transplant lurking in his future and the thought of it chills me to my very core. When you have an organ transplant, you are on a mild dose of CSA (an immune suppressant drug) your whole life. Since Daylon is already prone to illness and infection, this is not good.



He's taken a interest in tv ...well, more like he's taken an interest in Mickey and Curious George (George is his favorite at the moment)

As you can see he likes to be kissing distance from George and Mickey. By the end of an episode my back is usually aching from dragging him back a gazillion times. =)

   
  Something exciting for us to report is that Daylon has had a burst in talking. He's still not age appropriate but it's been such a huge improvement! We're really hopeful that his recent mental improvement will catch him up further with his peers!

He's become mister independent this last month and has insisted holding the breathing potion of the nebulizer for his breathing treatments. Such a big boy

 
  Everything else is about the same as the last time I gave an update: his heart is enlarged, blood clots in both arms, his brain is too small for his skull (but rewiring itself all the time, thank goodness!), he's  not had a blood transfusion since Oct. and he continues to have "junky" lungs. His breathing has fluctuated over the last several weeks with our CA wind and then rain and then sun and then wind and rain. It's part of the reason we're so excited for Spring over here! We can go OUTSIDE!! I'm so pasty white I could pass for a ghost. Haha! We have three months before Summer comes and starts to break down his skin and then it's back indoors.

One of his most loved (or loved on) toys. I picked this beast up at Costco last Spring for $30 and I just saw them there again this week, in case anyone is interested.

  All and all, Daylon is doing really well! We are still unsure of his future and how much time he'll have with us here on Earth, but we're taking it one day at a time and enjoying every moment we have with him.
   I want to thank you all for all of the love and support our family has received over the last 2 years. It's been amazing, and I'm grateful that there are so many of you who still continue to pray for Daylon and our family and check in on him. I'm sorry I'm such a horrible blogger, but I am grateful.

  For your entertainment, I give you dancing Daylon...



PS- I put an email button up on the blog for those of you who have requested it. Thanks for checking back so often to see if I've updated...again, Sorry!

YAY!!!

 Daylon

took

TWO WHOLE STEPS

today!!!!

It's a miracle!

Tripp

As many of you know, Tripp has returned home and is no longer in pain. Brian and I are heartbroken for his wonderful mama, Courtney but we're so grateful that he is enjoying the peace that we've all prayed for. He was such a great fighter and will never be forgotten. He has touched all of our hearts.  He will be missed, but never forgotten.

FINALLY- an update!

not the best photo of Keira, but I love how big Daylon thinks he is in the one!

 
    It's been almost 2 months since my last post! I can't believe I've let time get away from me like this! A huge thanks to all of you who have phoned, email or Facebooked me about Daylon's progress. Your support is incredible! Since November, we've been busy getting ready for and enjoying the holidays. Between school and  church Christmas activities and our family traditions we've stayed very busy. Today is actually, the big kids first day back from break!

Christmas morning wearing the hat Caleb bought him for a gift

  Daylon LOVED the Christmas season. He really doesn't have a clue about Santa, but he enjoys saying "Ho!Ho!Ho!" every time he sees a bearded man and now seems to understand that Jesus was once a baby. He loved the lights, tearing wrapping paper, Christmas songs and his new joy: Hershey kisses. He surprised us all with his willingness to stay away from the village, wrapped presents and lower ornaments on the tree once we told him that they were off limits. Possibly, more than Christmas, he enjoyed New Year's Eve. We always celebrate Eastern Standard Time New Years with the kids. We watch the ball drop, have sparkling apple cider and the bang on pots and pans to ring in the New Year. He was a little madman with his spoon and pot. It made me so happy to see him light up like that! I couldn't help but think of how far he's come over the last year. I am so grateful for the many, MANY blessings we've seen in our lives.

New Years Eve at Gma + Gpa De La Cerda's. I was smart enough this year to not pass out spoons until 30 secs were left! Haha!

     At the moment, Daylon's skin is going through a bit of a rough patch, but I'm sure it will begin to heal soon. His foot, back, back of his neck and diaper area have opened up and been a bit of a problem for him. We've just come to expect these changes in his skin and pray that they will continue to become further and further apart. The problems with his foot kept him from standing for a couple weeks, but just over this weekend, I've seen him pull himself up once or twice. I just wish his foot would heal so he could start walking. He gets so frustrated that he can't keep up with other kids. It tugs at my heart strings watching him try to make friends.

Enjoying the Claim Jumpers "Mother Load Chocolate Cake" on our date night with the boys. If you couldn't tell from his face, he LOVED it!

     One of the biggest and most exciting piece of news, is that we were given the "OK" for Daylon to attend church and the movies. That means two things: one, he is now healthy enough to completely be out in public and two, we can start attending church as a family for the first time since his BIRTH!!!! Going to church is something the other four kids were brought up doing every Sunday and now Daylon can participate too. We've been waiting for this for such a long time!

Silly boys

WHAT.A.DOLL.

    As far as development, Daylon is doing great. He says about 50 words now and understands most of what's being said to him. He is such a little miracle. He's learn to climb the stairs at lightning speed and pull himself up onto chairs using his arms. You know that saying, "When life gives you lemons, you make lemonade"? That Daylon through and through. He has so many obstacles and he either hurdles them or finds a way around. He's taught himself how to use his knee as a foot and has switched to left handed since his right side doesn't work quite as well.

Happy

inquisitive





Mad (he wanted a "cup")

Sad ("no cup until you say please and ask nicely")

...and so he did. :)

     More than anything, I notice that Daylon is happy. He's spunky and sometimes even naughty (he's even been in time-out!) and I know it sounds crazy, but it makes me so happy! His smile just melts hearts. He's such a silly, little monkey. He has had more trials than I have ever known another to have, but he's finally able to enjoy life. Everyday we witness God's hand in our life and it's such a blessing. We are so thankful for all of the progress he's made and all the obstacles he's overcome.  We're thankful for Dr. Tolar and Dr. Wagner and their research and the desire that they have to help save these beautiful butterfly children.
   We're thankful to all of you for stopping by and checking in on Daylon. Although, I'm not always the most faithful blogger, I am always so grateful for the army of people around the world who love our son and our family and support us in this journey. We love you.















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