Day +109

Hello Everyone.
I just wanted to let you all know that Bella's heart stopped yesterday afternoon and she went to live with our Heavenly Father and elder brother, Jesus Christ.  We are all shocked and saddened by the loss of sweet Bella. I ask that you please take a moment from your day to visit Bella's blog and leave a message for her family. We have come close to loosing Daylon a few times, and I was beside myself. I can only imagine what her poor family is suffering right now. We can all rest a little knowing that Bella is finally free of EB and all the pain that she has had to endure in her earthly life. We love you, Bella! Until we meet again!

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 Daylon has had a good weekend. We have witness the benefits of your prayers in our lives once again.
-On Tuesday I posted that Daylon's post stroke issues were really concerning us and that his personality wasn't improving the way we'd hoped
-On Wednesday we united in special prayers for Daylon, with an emphasis on his kidneys
-On Thursday...no joke...Daylon woke up happy and smiled and played all day. We were thrilled with the happy change of events, but honestly wrote it off as a fluke day.

Daylon playing with his "Tickle me Elmo"

   ALL WEEKEND LONG, Daylon has smiled, played and coo-ed! It's been SO amazing to have our happy baby back! He's so adorable! I just want to squeeze his little cheeks! I don't, of course....his skin is good, but not that good! :) I know he's my kid, but I think he's so cute! Oh. I have a new first in the life of Daylon! A therapist was fussing over him and said, "He's such a pretty baby!". I just sat there numb and on the verge of tears. That has NEVER been said about him before! When people look at an EB kid, they often have a hard time seeing beyond the sores, pain, suffering. He's always had a personality that shines through all his boo-boos and he's been called a doll, sweetheart, angel, sweet, pumpkin,even cute (which I pretty sure people use to describe his personality) but never pretty. Looks aren't everything, that's for sure,  but to hear that he's improved enough for other people to see him as his family and friends see him, felt great. :)
  Daylon's CSA level was upped again on Saturday. His rash is getting worse and they want to keep his levels up high to help his body fight GVHD, if that is what it is.  Considering all that, his kidneys are maintaining consistency at the level they're at, which is a little miracle in itself.
   On Sunday, Daylon rolled a bit during nap time and his G-tube started to fall out. I'm almost grateful I was at church for all that. By the time I called, Brian had dealt with the fiasco (he called the BMT Fellow) and it was over. Good save, Brian!
   OH! I forgot! The end of last week Daylon started using his left hand to clap by hitting his tummy! It was so fun to watch him adapt to his circumstances and be happy. Each day this weekend, he made big strides with moving his right arm up and getting it to interact with his left. Sunday night he start actually clapping! That's right folks! Both hands, moving together!...on purpose! Go Daylon!

   Well, that's about it for now. I'm totally drawing a blank. I blame 4 hours of sleep each night. :) We're so thankful that you're all Daylon's cheerleaders!

Pictures from this Weekend:

Friday: Keira and her puppet for the RMH puppet show



Saturday: Built a fort in the bedroom. Played, ate dinner and then watched "The Princess in the Frog"



Sunday: after dinner