Saturday, June 12, 2010

The Family Reunited

Hey! Check me out on my new ride! Like it?

Man, it feels GOOD!

Ali, Bella, mommy, and grandma arrived via airplane today in rainy Minneapolis. I spent most of the day (except for taking in the USA v. England game) feathering the nest. I found out that we are 4th on the waiting list for a BMT room, so I unpacked all our stuff in our "transition room." The way it works here at the RMH is that first you get a standard room, then once a BMT room becomes available, you get to move in. The BMT rooms are bigger suites for families who will be here a long time due to a bone marrow transplant. It's just luck of the draw as to how long it takes to get into a room. Could be two weeks, could be two months.

Home Sweet Home

Anyhow, after a trip to "T-1" (the very first Target ever... it is AWESOME), I was able to unpack and store everything we own in our hotel-sized room. Gifts were awaiting the girls from a successful run at bingo Thursday night. They have bingo once a week here and they give away LOTS of toys. I won a "Baby Alive" doll for Ali, a Little People Fire Truck Ride-On for Bella, a Mickey Mouse Clubhouse DVD for Ali, and a set of butterfly wings to hang in Bella's hospital room. I made out like a bandit! Ali loves her new baby, "Ebba," and Bella totally digs her new fire truck. We also played in the giant indoor playground they have here.

Christmas in June!

I bet your kids never find the other's toys more interesting than their own...

I got to meet the other EB families, and Ang has gotten to meet some of them already as well. It is nice to all be here together. Strength and hope in numbers.

P.S. Bella is getting strong enough to get up onto her hands and knees, reach, crawl, sit up, and get around in a mixture of scooting and crawling. Her head is so big that these activities have been a little delayed. We worked hard on them in Physical Therapy before we left, and it's starting to pay off! Yay! Yes, this has meant that her right knee, which used to be relatively unscathed, has now really started to blister BIG TIME, but with Epidermolysis Bullosa, you just learn to deal with collateral damage in everything, so it's all good.

P.P.S. Please check out the TWO new video/photo montages on youtube under the VIDEOS OF BELLA tab on the right. Also, please purchase Bella's book or if you already have, tell your facebook/twitter/linkedin friends about it.

Alright, last one to bed as usual. Still gotta get one more bottle into Bella; the traveling threw everyone off their schedules. Nice to look over and see a room full of sleeping ladies. This is our home now for the next 4-5 months, and it feels good to be together. Ang and I do a pretty good job of flying solo when the other is out of town on business, which is a regular occurrence in our house, but when the 4 of us are together, how do I say this... well, we just feel... galvanized.

Our Family Credo is, "Together, there's NOTHING we can't do!"

Much love and gratitude to you all.

Good night.


  1. Thanks for the pictures and update. So glad your happy family is reunited. You are all so strong!

  2. PS My new desktop background is the picture of Ali and Bella playing with their new toys at RMH. Mom

  3. oh..this post made me cry.
    (and it's not from jealousy that you went to the best target ever).
    so happy you guys are together....

  4. Just got done reading your book from cover to cover. I started it this morning. I too had an infant born with EB who was in the NICU for two months,she is now 3 1/2 and doing well. I think being born at 29 weeks and by C-Section helped her to avoided being born with skin being ripped off! I am planning to start follwing this blog as I totally related to SO many feelings that you had! Hope your family and little Bella is doing great! And just as a side note we had a person who came in the NICU and played the harp when my daughter was there! Thank you so much for sharing your life story!
    ~Tamara's Momma Sutherlin,Oregon :)

  5. Glad all arrived safe, sending the positive your way.