A new man

I can't even hardly believe how great Daylon's days have been going. I don't know if it's getting enough to eat, the right antibiotics fighting off the pesky bugs that have been lurking in his system, or what, but Daylon's personality pre-transplant has been back and he's happier than ever! I just love it!!! He's smiling ALL THE TIME!! He's doing these deep little belly laughs that I haven't heard in about a year, he's started talking a little more, he's playing with toys, heck! He's even letting us put him on the ground to play with having a total meltdown. I can pee in peace! Aaaaaaaaaaa (That's the choir singing)! Okay, and get this. He has actually started hugging!! Real, honest to goodness hugging. Before if you asked for a hug he would just rest his head on your shoulder, now without even being asked, he'll open his arms up wide and give you just the cheesiest grin, hug super tight and rest his little head against your shoulder. It melts my heart. =)
  I will say though, with Daylon being so much more alert, giving him his injections of Epigen have become much more difficult. He used to just fuss for a second and then go back to his listless self, but now he fights and cries. He just looks at me with his little quivering lip with the facial expression of, "How could you". Oh, how I hate poking him with needles. The lack of fat on his legs, doesn't help either.
  Back to the good news...
  The blood work has come back from his One Year Check up and (drum roll please!) Daylon T cells are 100% donor and his C3 cells are 99% donor!! Yay!! At his 6 months labs, he was only 70-something % donor and we were becoming concerned that he was losing his engraftement, so this is GREAT news!! Still no word on his skin biopsies, but we're anxiously awaiting the email!
  At this weeks BMT appointment, Dr. Buchbinder said that he feels Daylon's check ups can be moved to every other week! I'm so excited to get two of my Wednesdays a month back! It's such a pain to load everyone up, travel over an hour (sometimes several in traffic, especially coming home), and worry about the five of them touching stuff in that germy clinic. They have babies with RSV, BMT kids, pulmonary kids, everyone, all lumped together in the same waiting room. One word: GERMS. So glad to get a break! Oh, I almost forgot! The reason Dr. Buchbinder feels he doesn't need to be monitored so closely by BMT?  He's gained almost a whole kg (2.2lbs) since surgery! Well, that's about it for the news on this end. Hope you all are doing well. Thank you for your love, support and so many prayers! We couldn't ask for more. :)

in the hospital

yesterday