Today was a good day! Started a little foggy outside, but that burned off and left another beautiful summer day. I heard it is snowing somewhere out there. Send it to southwest Colorado will you? I've been promising Ali a white Christmas at Nanny's, and would you believe, even at 8,000 feet, they don't have snow yet? I think Minnesota is hogging all the snow! Quit hogging and share a little you guys! I mean really, you're gonna ruin a little girl's Christmas already! LOL.
It was my first day back in the infusion center since Christo worked on me on Sunday, and it was totally different than when I was in there last week! There was no pain at all, I felt clear, comfortable, and really connected to the staff and the patients at a whole new level. There was a confidence that had been missing for quite a long time. I even sang a few Christmas carols at the nurses' station and they all sang along! It was really fun for everyone. The nurse practitioner, Rochelle, caught some of the shenanigans on her iPhone, so I'll be on the lookout on youtube or facebook!
I met a guy today from Iran who said when he was growing up there, there were very few opportunities to listen to music, unless "it was for army." Man, I know I take my freedom for granted more often than I should. I thought to myself, "you mean you just couldn't go out and play any instrument you wanted?" Boy, we have it GOOD here in the U.S.A.
Guess what??? Mommy got a (temporary) promotion!!!!
She began yesterday officially as an (acting) Associate Director at Verizon Wireless! The person previously in this position was pulled off it to work on a special project for 3 months, and Ang has been in line for this level position and got the call! I may have intimated this in an earlier post, but she is rockin' and rollin' now! It's really great, because if this had come in October, she would have had to pass it up, but here it is! Merry Christmas indeed!
Ali is just about the cutest thing on two feet. She is absolutely adorable. The witty banter at the dinner table, in the car, wherever... it's too much. Tonight, we were having a race to clean up the popcorn from a gift that came in the mail (thank you, Molnlycke!), and she was straight up talking smack! It was hilarious. First, she was telling me how she was going to beat me, then as she realized she was losing, she changed it to "we're gonna tie!"... but pretty soon it was "daddy, you're gonna beat me!"
Lately, we have been putting Lucy in Ali's bed with her to keep her company overnight. It is hilarious, because Lucy really has very little to no interest in Ali whatsoever, but the bed is 4 feet up in the air so she's trapped. Ali loves it, and what she doesn't even realize is how much a pill Lucy is to her! She thinks it's great, bless her heart! It's been good for her because Ali is definitely a little scared at night in her room. It must be so SILENT for her without Bella. There was just something SO RIGHT when I would walk in their room late at night and see two girls sound asleep. I'll tell you, it was a dream come true. I thought I wanted a boy for baby number two, but 2 girls was always awesome. I miss Bella so much. I feel like in one way, we went back in time to when it was 'just Ali.' Please don't react to that. What I mean is that, well, never mind. I don't need to explain it. It certainly was a lot harder to manage, but it was so worth it. I miss that kid.
Okay, onto some other people for you to be following, supporting, and most importantly, praying for...
"There's a new kid in town..."
If you haven't met Charlie yet, he is an adorable boy who is beginning the BMT study in MN right now. Please take a minute and buzz on over to give the family some much needed support. Your love, support, and prayers have kept us afloat ongoingly throughout our journey. I'm sure Charlie and his family would welcome that same love with open arms!
If you haven't visited Daylon lately, please do so as well. He had brain surgery to remove the fluid building up around his brain, and while it was a success, he is still in the hospital, there are 4 other kids to manage, and there are some pretty big snow drifts in Minneapolis right now!
Payton will be on TV tomorrow night on TLC! The show is called, "My skin is killing me," and it chronicles his journey to MN and through BMT. They were filming while we were there; Payton was the next RDEB patient in the study after Bella. PLEASE share this show with your peeps on your facebook page / email list. It will be a really great window into the world of EB BMT.
Thanks again for being with us throughout this journey. We really appreciate you in our lives.