Thursday, June 17, 2010

Finishing up Day -7

Well, Day - 7 is coming to a close here in a few hours. Just one more day of Busulfan (one of the chemo drugs)! I'm particularly excited about this because the rule of Busulfan for EB kids is dressing changes at least once a day since the chemo is released through the skin. Blah! Last two changes have taken 2 hours and lots of tears on his end and frazzled nerves on mine. I don't think I'll ever get used to EB, emotionally speaking.

Daylon is still in good spirits but the chemo is starting to take toll on him. He's not been eating as well as he usually does.Really it's about a quarter of what he does normally. They Dr.s today talked about adding TPN (it's IV nutrition) to his lines soon. He's still able to sit but he's really wobbly now and tires out quickly. I've learned that the hard way when he toppled over this morning and hit his head on the crib. It turned out to be a pretty bad wound, poor baby. He actually got hurt a few times today, but we were warned that his skin would brake down even easier these days. His hand in the picture is one of them. As you can see though, he's still willing to play! What a champ!

The hospital encourages family life living, so each BMT room is nicely painted (we have a blue accent wall), but outside of that, it's a empty canvas. They want the family to turn the rooms into "bedrooms" with photos and decorations. Studies have shown that people heal more quickly in a comfortable home atmosphere, which makes sense. Anyway, I went to Target yesterday when Daylon and Daddy were getting some daily bonding time in, and I snagged these great animal safari decals on clearance for $10. There were a bunch of animals in the pack so I was able to do the whole room! Pretty cute, huh!? The Care Partners program gave us a gift bag that had some window crayons, so the kids drew pictures on the windows for him. He likes to stare and point at the touches to his room so we'll call it a hit!
Speaking of "hit", the RMH Summertime activity this week was drama camp with a special show of "Annie" on the last day. The play was sooo stinkin' cute! Keira was only there one of the three days but she was GREAT! Yep, I'm one proud mama! They even made the costumes! It's kind of funny story but every time I would look at Keira during the play she was so serious. I even tried to get her picture before hand, when they first walked out, but she wouldn't smile. After the play, same thing. I took a few serious pictures and I asked her to smile but she wouldn't. Finally, I gave up with the pictures and she asked to take off her costume. The second we did, she started smiling and jumping around. I just laughed at her apparent hatred for her costume, and asked her why she didn't smile like that before. She matter-of-factly replied, "I was being a sad orphan, remember." Way to stay in character!
Ally (Bella's sister, left), Keira as "Pepper" (center), Emily (right) Sorry about the cell phone pix quality.

The orphan cast of "Annie"...Keira's bottom right
Thanks for all your thoughts and prayers! They're working!


Linda said...

Just checking in to see how Daylon is doing. He is such a trooper, like all of the EB cuties. Sending lots of prayers your way. Hoping everyday gets a little bit easier for you guys.
Love Keira. She was a sad orphan. I think you have a future Oscar winner on your hands.
Please kick some EB butt for all of us. Take care and giv Daylon a gentle hug for me. Love Leah's Nana

Jan's Blog said...

Bless you all.

Kristyn said...

Too Cute! I'm crying over here !! I'm so happy for Keira! love you guys. Stay strong baby Daylon!

Skye is the Limit! said...

That sounds like an AMAZING hospital!! I wish all hospitals were like that!! He looks great, I will keep you in my thoughts and prayers!

Patrice said...

So glad to hear things are going as well as could be expected and that Daylon is doing okay after the first chemo drug. That's so funny about Keira. Kids are so funny! Glad God is giving you some laughs through the tough times. Still praying for Daylon and Bella and their brave donors! Love you guys!

Mom to Many said...

Thanks for the update!