Wednesday, June 16, 2010

Getting used to "it"...

... is a BAD idea around here!

As the saying goes, what's the only constant in life? CHANGE. Well, today was a classic example of that. The degree to which a person can derive satisfaction in life has to include their ability to adapt quickly to the inevitability of change. All throughout the day, I kept getting hit in the face with the thoughts, "... but this isn't how they said it would go," and "... but this isn't how this is supposed to go." These are not empowering statements. Even though I know this, I had to deal with those two thoughts coming to mind at almost every corner. By 5:00pm, I was tired of working the muscle that lifts those two thoughts out of the way and replaces them with something to the effect of, "OK, now how do we deal with THIS?" I simply did way more reps on this machine than I was expecting, and by the end of the day, I was tired and sore! LOL.

Anyway, here's the summary:

The Good:

Today was Ang's first day in her new office! She has been communicating with the local office here in Plymouth for a couple of months now. They have been beyond hospitable to her. They had a cube with supplies waiting for her, her card key ready, and pretty much everyone knew she was starting today and made it a point to introduce themselves.

The Edlings, Baby Daylon's family, playing on the front playground...

We got the word that on Friday, our BMT suite will be available for us to move into! This will allow us a lot more breathing room than we currently have.

Bella's new hickman line makes taking blood samples E-Z! They sure took a lot of blood from her today, and it was relatively painless.

I found a place to play guitar outside in the grass park across the street.

The park across the street from RMH where went and JAMMED today...

The coffee in the hospital lobby is GOOD! It's also closer and cheaper than Starbucks!

Free chair massages at dinner = grateful body!

( I just woke up... asleep at the computer... gonna keep this short)

The Bad:

Ali refused to get her blood drawn in a knock down drag out no holds barred fit at the clinic today. Not a good start for her in the clinic. Tomorrow morning we return with medication, movies, silly songs, an anything else to get her to let them draw her blood.

Meet the Donors! Caleb, Baby Daylon's donor and Ali...

The cleanser they used on the skin around Bella's Hickman today made her scream a 10 out of 10 pain cry for about 30 seconds straight. That hurt me as well as her.

They scheduled so many things for Ali and Bella that their appointments overlapped. I was in with one or the other from 7:30-4:00 with NO break. Thank GOD again for Grandma. I would have officially been sunk if it wasn't for her... again!

Tomorrow in the am we have more labs, procedures, etc. By Friday, we'll meet with our work up doc, Dr. Orchard to determine what the transplant schedule will be.

P.S. Our partnership with DebRA on book sales for June is already halfway over! Please consider ordering 1-2 copies for yourself and a friend or family member, won't you? :)

Gotta... get... to... bed...

Thanks for your love and prayers. Keep 'em comin!



  1. Hi Tim: Just checking in to see how Bella and you guys are doing. Sounds like it has been quite a roller coaster ride of emotions for you. Praying that everything goes smoothly for precious Bella.
    It must be so hard to be one of the pioneer families going through this. You do what you MUST for your children. To find a cure for this awful EB, I'm sure you would do anything. God Bless You all and remember your EB family is out here praying our hearts out for you guys. Take care and thanks for the updates. I will be checking all the time. Thanks. Love Leah's Nana

  2. oh, sweet heart broke to read that...
    hopefully, the next day is better...or the one after that. Oh, by the way, I dropped something off at church for her...but I don't think you guys picked it up.
    How can I mail something to you??

  3. Wow! Busy,busy,busy! Thinking of you all! Thank you so much for sharing! Take care! Lydia

  4. Hey Tim!
    I'm so excited to hear things are going so well for you guys (I'm kind of out of touch at being at the hospital)! What sweet pictures of the kids! Brian said the kids are having so much fun with your girls! Can't wait to see up here on Tuesday! Party on the BMT floor!:)