Wednesday, March 3, 2010

9 months in, 9 months out!

Well, Bella turned 9 months old last week. Sorry for the lapse in updates. So much to catch you up on.

Last week the entire family was flown to Phoenix, AZ to attend the Molnlycke Healthcare National Sales Meeting. Molnlycke produces all of the dressings (except rolled gauze) that we use on Bella. When our Physical Therapist Betty had trouble trying to dress Bella's wounds in the NICU, she called Tara Keebaugh, the regional sales manager. I think Tara and the local distributor rep, Jennifer, were out waiting for us in Bella's room the next day. Might have been 2 days, but I seem to remember it being FAST. Anyhow, they were awesome; they really gave Betty some great advice on what products they had that would do a better job than the McGuyver- job Betty was doing with what she had. Tara and Jennifer were really helpful and supportive, and we were left delighted with that experience.

Fast forward to last month where I got a voice message out of nowhere from Tara explaining that Bella had been selected essentially as "Patient of the Year." Each year at their national sales meeting, they have a patient and their family come to the event and share their story so the sales force can see who really benefits from their products, since the sales people don't usually interact directly with patients. This year, Bella was selected to be that patient.

So Wednesday, we headed to the airport. They got a seat for all four of us on the plane, and had an SUV with driver waiting for us at the baggage claim! We were expecting to go to the Phoenix Airport Marriott, and in fact had family waiting there for us to have lunch when the Alan, the driver, says, "So, have you been to Desert Ridge before?" Desert Ridge? That's a different Marriott altogether! It's a waaaay nicer Marriott as well! Pretty cool except for the fact we had family meeting us at the other hotel! So, 15 minutes of scrambling to get various family members on the phone later, we're all on our way to the J.W. Marriott at Desert Ridge. WEEEEEE!

The property, accommodations, and service were all world class. We're waiting on copyright clearance for the video we made of the event. Even though I used my friend's music and cited him and how to get the CD in the video, youtube won't publish it till I submit a written letter from my friend giving me permission to use his music (no joke). A little draconian, but I get the idea. Good thing you don't have to do that with written intellectual property. Can you imagine?

Molnlycke also shot professional video and photography of the event and be sure that as soon as we get it, we'll share it!

They gave us 30 minutes to share our story. Tara began, and introduced Betty, and Betty shared for a couple of minutes. Then she introduced us to a standing ovation. There were about 100 people in the meeting, mostly sales, some marketing, and some admin. Ang started out with a killer slide she made about 10 things you may not know about EB. Most of the end users of Molnlycke products are burn patients, so the group only had limited exposure to EB. GOAL #1 EDUCATE THEM ABOUT EB. CHECK!

Then, we showed them the "Bella's Beginnings, extended version" video and explained the impact of Bella's song and how it assisted in every hospitalization to calm her down during painful procedures. GOAL #2 EDUCATE THEM ABOUT MUSIC THERAPY. CHECK!

Then, we shared about Bella's book, and everyone in the conference left with an egg shaker that had the butterfly from the cover of Bella's book, and on it. GOAL #3 EDUCATE THEM ABOUT BELLA'S BOOK. CHECK!

Finally, because of my training not only in music therapy, but in using music in corporate and employee wellness, I thought since we had so much time, we'd give them a gift and do a little group music making for team building, and a brief visualization exercise. At one point, I had the both the U.S. President and the worldwide CEO of Molnlycke on stage playing a heartbeat each on a frame drum I gave them. I distinguished them as "the hearbeat of the organization." While they laid down a steady heartbeat, I had one half of the conference shouting "DELIVER" while shaking their egg shakers up on their feat, and the other half responding, "THE DIFFERENCE!" while they were up on their feet shaking their shakers as well. That was the theme of the meeting and it was posted EVERYWHERE. I had the two sides competing for who could play and shout the was awesome. Then, we closed with a brief visualization exercise to really bring home the point that they really have no idea how many people's lives they make better every day in their job, even though their job isn't to necessarily treat patients directly. After there wan't a dry eye in the house, the Prez and CEO presented us one of those "Publisher's Clearinghouse" cardboard checks with Anabella's name and a generous donation on it. We were back home Thursday evening.

All of that was amazing, but do you wanna know what the REAL bonus of the trip was? Getting to spend all day Wednesday and Wednesday night with my brother Paul, his wife Heike, their 9 month old daughter Liesel, and my mom Sheila and step-dad Ralph. We had lunch and dinner together Wednesday, and spent the rest of the day either relaxing together in our suite or shopping. I even got to babysit all 3 girls in the afternoon! It was a true celebration of family, not just for our little family at the conference, but for a portion of our larger family. After the conference, I took Ali on the lazy river ride at the hotel for some "just Ali" time as well. To prove to her my commitment to swim with her, she and I wore our swim suits under our nice clothes during the conference so we could get to swimming right away afterward!

Whew! On top of all that, on Thursday we launched 3 new pages on the blog here in case you haven't seen them, as well as, which Rodger, my stepfather-in-law, and I made ourselves from scratch, and.... our first copies of Bella's Blessings: a Humble Story of Providence delivered to our home! Talk about a labor of love. The book was 9 months in the making even though the story inside only covers the first three. I thought I'd have a book in hand by October 1st EASILY. HAHAHAHA. Writing, producing, and publishing your own book takes waaaay more time and energy than I realized! It was a great learning experience, though, and I'm really proud of it.

We are REALLY EXCITED to announce our first partner organization: Pioneering Unique Cures for Kids! (PUCK) They are working with U of M helping to fund the EB trial as well as other programs there. Up to 50% of the proceeds from March book sales will go to PUCK, and we are just so excited to get to contribute to an organization that is supporting Bella's BMT this summer!

In other news, Bella's 9 month check ups were yesterday. 90th percentile in height and weight. OFF THE CHARTS in head circumference. That part is actually a cause for alarm. Her growth chart for head size is pretty much vertical. She needs to get an ultrasound to check for Hydrocephalus because her head has been getting steadily bigger than the rest of her already gigantic body. Luckily, she doesn't seem to have any of the other symptoms associated with the condition, but our pediatrician likes to be cautious and that is a good strategy with Bella.

Her check up with her dermatologist was also yesterday, and when Dr. Metz heard her growth, she was so excited. She said she has NEVER had another RDEB baby grow so big despite her condition! When I told her about the BMT this summer and told her Ali was HLA identical (meaning the best possible donor out there for Bella), she looked at me, and with tears in her eyes, she said, "So the very etiology responsible for her condition will also be responsible for her cure!" It was a really tender moment, and to hear the clinician in the white lab coat get so emotional over Bella... well, Bella, you're just doing your thing: inspiring the world one person at a time.

We are so flattered, lucky, and blessed to be along for the ride.


She rocks.

and she hasn't even spoken a word yet.


When someone you see or know is suffering, don't worry about having the right words to say. Just a smile, prolonged eye contact, and even a touch of the hand can do more than a snazzy quote.

With that, I thank you all for joining us on this amazing and wonder-full journey.


  1. thanks for letting us take the journey!

  2. The website and pages are fantastic! I visited last week and noticed all the changes, awesome! Great update.

  3. We're still here and still praying.
    Love Russ, Jen, Cody, Casey, & Celeste

  4. Such precious girls you have. Thank you for sharing your story.

  5. Your family is such an inspiration to mine, I'm sure to have gotten to see a glimpse of you with your girls even though we never met!

    Kelly, Randy & Peyton