Tuesday, December 14, 2010

December 14, 2010: Into the Groove


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.

God night.


  1. Congratulations to Angelique...wow, sorry if I spelled that wrong. Never been my forte. So glad to hear you are rockin it at the hospital! You are forever an inspiration. Thanks for all the posts and pics. Reading them tonight was my "break" from my music therapy pediatric rehabilitation final paper. It's a zinger! Much love!


  2. Oh the snow pictures on daylons blog....brrrrr...hope you get some white on your trip...
    Ali is a fantastic little girl. At Bella's service we had a nice chat in the ladies room....she let me know when she gets to kindergarten, she was going to ask " a lot of questions...like do they have memorials for all butterflies when they die?...and do those butterflies have their own cloud, or one big cloud?"
    she's wonderful because she's so wise and yet, still such a little girl, too. I adore her...(when I told her I teach kinders, she replied so matter of fact-ly "that's fantastic "....just like a grown up would). She's going to do big things......and I have an idea to throw at you ;)
    (I know I shared that story with you....but wanted others to hear it. Especially if her future kindergarten teacher reads your blog....so she will be ready :)

  3. Bella has been on my mind today. Some moments I smiled and others I cried. Still missing her here too.

    The caringbridge page for Charlie is http://www.caringbridge.org/visit/charletonknuth...I had to play detective when it didnt come up.

    Way to go Angelique! Hopefully this ends up becoming a permanent position somewhere down the line. :)

    I love the picture of Bella! :)

    Sending you the snow. MN has been sharing with us. :) Although I must warn you with the snow comes the cold. Highs in the single digits and lows on the negative side. :)

    Ok...it is 12:30...must get some sleep.

    Sending my love to all and the sweetest of kisses to Ali.

    Denise WI

  4. Congratulations to Ang!
    Good too see that you are feeling better.
    My son,Martin (12), asked me to tell you that he watched a documentary about the chilean miners and when the mine started to collapse and they were trying to escape two of them came across with a buterfly and it was so wierd that they stopped to look at it. They saved their lives because they stopped and got trapped because where they were heading everything collapsed and they would have died. Martin came inmediatly to tell me the story of the buterfly and that he thought of you and Bella.
    Please don't send snow to London because I'm leaving to Argentina on Sunday and I don't want my flight to be cancelled!!!

  5. First- You can HAVE this snow! How much do you want because we have about 25 inches to share! Ahh! Do you want some cold to go with it? How about like -20 degrees worth? Ha!

    Congrats Ang! You are amazing! Good luck!

    Can't wait to see the show!

    Much Love,
    Amanda Schauer

  6. Congrats to Angelique, but I miss her so much already!!!!

    I love the green flowered rain coat on Miss Bella - I miss her a ton so I know how much MORE you, Ang, and Ali must be missing her. Just sending hugs and thoughts of comfort to all!

    What you say about our freedom and all that we have here in the US is so true! So many folks never get to leave their little secure and happy world to see anything else, so it is hard to imagine stuff like not being able to listen to music, but it is there and even worse. We are so BLESSED here!


  7. Congratulations Ang!! You rock.

    (And that coat of Bella's is super fabulous.)

  8. Congratulations to Ang! And good luck for her in the new job! She is really an amazing worker!

    I also miss your beautiful Bella. It is so sad...

    Tim,my husband name is Christo, may be the man who "worked" on you is a fellow-countryman? That's good that you feel much better and gave more Christmas spirit to the staff and patients.

    I was thinking today about a short story from Isaac Asimov about a clinic in wich the doctors try to find the vibrations that will affect positively the depressed ones and end up by playing to them "When the saints...". So MT is not a new stuff ;).

    Good luck to all of you in the best (and worst)time of the year!


  9. Just DVR'd the TLC special. Teren is out of town and I want to watch it with him. Will be sending Charlie our love too.

    Keep on keepin' on!

    Brianna and Teren

  10. Just a suggestion,...
    If Ali is feeling anxious at night, it may be a fun idea for her to fall asleep listening to a book on tape :)

  11. CONGRATS Ang!!! Your promotion is awesome news. Keep up the good work!

    You are right Tim, Ali is adorable. I'm sorry she is having such a hard time at night. My daughter Malorie has been having a hard time sleeping alone in her room lately too. It started during October because she was scared of her dads Halloween decorations. Now she thinks she has monsters in her closet. She'll last about 5 hours or so in her room before she climbs into our bed for the rest of the night. Then I get kicked all night long. Maybe I'll try Sara's suggestion of a book on tape.

    I'm glad to hear you have your confidence back, that's awesome.

    I watched the TLC show tonight with Payton. It was really good. Looks like Payton is doing really well. Hopefully, lots of people watched the show and will want to help EB research!!

    Stay Strong.

    Lots of Love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, CA