Day +125- Long time no talk to!

  Hey everyone!
  I'm so sorry for the delay in posting! Thank you to those of you who emailed, inquiring after Daylon. Our computer broke...AGAIN..(UGH! Toshiba!)...and we are without a computer for the next 3 weeks until they mail it back to us. I'm able to post tonight courtesy of our friends, neighbors and superheros, the Pops! Thanks for letting us borrow your computer guys! We owe ya one!

Catching up with the Edlings:

We all attended a beautiful memorial for Bella. We had to buy Daylon a suit since all he usually wears is inside-out onesies!

We went to Hidden Falls on a picnic with the Pops and the Ringgolds. I need to apologize ahead of time to the Pops...I had their family photo with the all the other photos to be downloaded onto the post and I apparently reached my year photo max with blogspot and they randomly picked a picture not to unload and that was the one. I've been trying for an hour to upload it by erasing pictures, but it's not working. Sorry guys!


L-R: Tim, Brian and Steve skipping rocks





Yes, that would be our son who decided to take off his shoes and socks and go knee deep in the Mississippi River when it's 45 degrees outside! He about gave me a heart attack! Funny story: He left his converses on a rock and we had no clue. We searched the house for his shoes and he eventually told us he left them behind.  Five days later the kids and I went back, just to check and guess what!...they were still there!



Tim's sister, Tracy was down from Spain and we got to visit with his mom too! They are such wonderful people!

 Daylon has been doing fairly well. This weekend the Jen and Bart Winkler let us use their cabin in Turtle Lake, Wisconsin to celebrate the Caleb's (4 on the 16th) and Keira's (6 on the 26th) birthdays since we weren't able to have a normal party here. A SUPER HUGE "thank you" to the RMH staff for all the presents they gave the kids! They spoil them rotten! :) You guys are the best! The cabin was absolutely amazing, but I'll get to that later. Daylon was such a sweet little boy the entire time. He hardly cried and loved taking in all the new surroundings. He played so nicely with his toys so I could cook and he loved hanging out watching tv being held. What a doll!

Grandma and Grandpa De La Cerda and Aunt Emily were able to sneak away to WI for the trip too!

holding Daddy's hand

 We spent some time in Stillwater, MN. I LOVE that town! It's so cute. It has a bunch of old fashioned looking stores and lampposts. It's a great place to window shop and walk down by the water. We ate at Leo's malt shoppe which is this cute little restaurant with ruby red booth and chairs and hamburgers and malts made fresh from the back. I felt like I was living in the 50's!....I love that!

The kids are so excited for Christmas! They say Christmas is for children, but I live for their excitement.

Teddy Bear Park. Everything is done up in trains and bears. By far, one of the coolest parks we have ever visited!

Keira and her birthday morning donut-post candle

  Daylon's creatinine levels are still on the rise unfortunately. They're nearing 5 (should be .58 or lower) and this far out from transplant....well, lets just say it's not good. They have decided to hold out on deciding on a kidney transplant for a bit longer. We need to get the whole GVHD idea under control (meaning, does he have it or not) and then his CSA dose will go down and we can watch how he does and decide.
  The last 36 hours or so have been rough on Daylon. :( He's been vomiting a lot. I mean, A LOT. Twice today he threw up blood and the last couple times tonight it's been darker, so I'm assuming it's old blood. This happens every so often when the blistering in his stomach gets out of hand. He's cried, moaned and fussed the entire day. In fact, the only time I saw him smile today was when Keira was entertaining him. Bless that child.

She is such a wonderful big sister. I wish I could have taken care of my siblings like she does hers. Anyway, he's been in a lot of pain and discomfort and we needed to give him extra bumps of Ativan, Benedryl (for tummy troubles believe it or not) and two extra doses of Oxycodone on top of his normal meds. He's stopped peeing over the last week and only had one poopy diaper today (yep, I just went down that road! ). Normally there's several, so I'm not sure if that's a good thing or not.
  Dr. Tolar has warned us about the ups and down of the skin post transplant and how it's normal to see improvement come and go a little bit until hopefully, a few year post transplant, the skin stays improved. Well, right now Daylon's skin is on a bit of a decline. He got a little scratch under his nose, two of his fingers blistered under his nails and bled and a his groin area had a little bit of skin lift away. The stomach acid that drips from his leaky g-tube has burned the skin on his tummy and yesterday's throw up event (yes, it was an event) left his neck and under his chin raw and irritated. Ok, so I know I sound a little doom and gloom, but keep in mind, this is a kid who was completely covered from the neck down 4 months ago. His feet are continuing to heal everyday, which is HUGE. They were such a mess such a short time ago! This is just a bump in the road. :)
   Daylon had his Day +100 biopsies last Wednesday (a bit late, but Dr. Tolar likes to get as many kids done on the same day so the photographer doesn't have to come back and forth a million times). There were 8 biopsies taken (including one to test for GVHD) and they performed the blister test again. So, some things to remember: Pre-transplant, Daylon's first blister (there are three taken at once) started to form at 3 minutes with all three blisters formed at 5 minutes and 18 seconds. His Day +100 blister test: first blister at 16 minutes, with all three formed at 18 minutes and 42 seconds!!!! Can you believe that?! I am so stoked! This transplant is really working! I know it sounds crazy that I should doubt it working, but this is and has been are only option to save Daylon. Making the decision to come here has been the scariest and most stressful decision of our lives.  It would be foolish of me to say that we're out of the woods, or to think that Daylon's life isn't in danger anymore. It is and I know that we've/he's got a long road ahead, but it's thrilling to have the possibility of seeing him off to his first day of school, taking pictures of him on Prom night, or dancing with him on his wedding day. It has been one of the hardest things of my life to rock my baby to sleep every night, just staring at his sweet little face knowing that I would never see him grow up. Every day I wished him here with me on earth was another day of pain for him to live through. I don't know how to put into words the heartache that comes with raising an EB child, or any special needs child.
  You know the song "Away in a Manger"? This time last year, Daylon was very sick. I would cling to him and rock him for most of the night, since he hardly slept from all the pain he was in. He loved "Away in Manger" and it was in those months that I developed an attachment to that song and especially the third verse:

Be with me Lord, Jesus I ask they to stay,
close by me forever and love me, I pray.
Bless all the dear children in thy tender care,
and take us to Heaven to live with thee there.

This week is EB awareness week. I would like to ask each of you a favor:

Will you please share your knowledge of EB with one person, who doesn't know about EB? It can be a family member, friend, neighbor, the produce boy, anyone. If we can educate the world on EB, there would not only be more funding for a cure of this painful disease, but also more understanding of what these kids go through the respect they deserve would be given. It would be wonderful if a stranger could look at an EB child and not think that his/her parents abuse them (yes, it happens and it hurts), or quickly get up and move away thinking that the skin condition is a contagious disease, stare at fused fingers or torn skin on the face, or make comments about the smell of infection or open sores. These kids often feel alienated and lonely. They deserve to be treated like the children that they are. Some EB patients are living into adulthood these days and are fighting their own obstacles. Wouldn't it be great, if they everyone understood their condition and was welcoming? I know, it can be hard, but please open your mouth and share what you know. If you would like to learn more about EB please visit the DEBRA website. With your help we can cure EB.
Sweet dreams.