Monday, June 14, 2010

Day 1 under wraps!

Bella knows how to "Lean on Me," with her big sis...

One day done, 110ish to go!

We spent our first day in the clinic today meeting with doctors, nurses, and educators. They took Bella's history since Jan when we were here last, and did sort of a physical. I say sort of because there are just some things you can't test or measure on a kid with EB, like an EKG or blood pressure. No problem. The staff was successful drawing blood this morning, which was a relief since when we visited Columbia, they stuck Bella 3 times and couldn't get any blood out of her. This morning: first try! First good sign! Tomorrow, they place a CVC, or "Hickman Line" into her chest that will remain in (cross your fingers) for the duration of the transplant. They will be able to draw blood from that since it connects right into the central vein returning to the heart. So, no more sticks for blood! It will also serve as the main distribution site for medicines and nutrients.

Bella chillin' in the exam room with daddy's hat

We have a 6:00 am call time tomorrow morning for the procedure. Ouch! Then, once it is placed, Ang and/or I will go into the O.R. and do her dressing changes while she is under sedation. Love that. They will also take photos as well as a skin biopsy. We should be done and back to RMH by 3.

Right now, as the cliche goes, we're taking it all one day at a time... like a mission. Our mission certainly looks easier to handle when we just take the day at hand. Matthew 6:34 comes to mind. Depending on the version, it goes essentially, "Don't sweat tomorrow; tomorrow will take care of itself. Today has enough in it to keep you busy." And you know what? it really does. We take for granted just how much action and decisions occur in a single day. It's good to focus just on the day. This doesn't mean don't plan for tomorrow, it just means stay present to the matter at hand. This is refreshing; remaining just in the present. Not sweating the future or second-guessing the past. Good stuff.

The Rock Star herself crashed out in her crib. Chalk outline, anyone?

Okay, we gotta get up at 4:30, so I gotta get outta here. Please pray for a safe procedure. Dr. Acton is our surgeon. Please send positive intentions and thoughts that guide his hands safely tomorrow morning. Thank you for your willingness to be a part of this journey. We are grateful to have you in our lives. Living with Epidermolysis Bullosa could seem like a solitary thing; after all, how many people really know what we're going through? However, we don't feel sentenced to solitude at all. The human experience is ubiquitous at the level of just being a human being. We all feel pain for another's suffering. We all feel joy for another's success. This is what binds us, connects us. We all have way more in common than not. I rejoice in this truth and focus on it, and it magnifies the joy, love, support, and care we receive from all of you.

May you be blessed in all that you do today.


  1. Wishing Bella all the best for tomorrows procedure. She is an amazing trooper, I know she is going to do great. Sending positive thoughts to the parents as well :)
    Love, Jen

  2. Sending positive thoughts to Bella,family and the doctor!! Thank you for sharing! :)

  3. I love all these daily updates...
    Thinking of everyone.

  4. Tim, Angelique, Ali, and Bella,
    Prayers, prayers, prayers and more prayers are being said for you and good energy sent your way! You are all amazing! Strong is just not a big enough word to describe you!
    BIG hugs!!
    Michael and Robin Setto