Saturday, April 3, 2010

Happy Easter!

Well, we've made it to Easter, and we have so much to be thankful for. We spent Saturday at Grandma's and Grandpa's house with Bella, Ali, and their uncle Steve and aunt Dina and cousin Wil, and new baby cousin Molly. It was a beautiful day, and the older kids had an easter egg hunt and the babies, well, they did their thing as babies. Eat. Sleep. Lounge. You know, the good life!

Ali Delighting in the Easter Egg Hunt

On the book front, we are excited to announce our featured partner for the month of April, MUSIC TO HEAL. Music To Heal is a non-profit organization that funds music therapy programs in children's hospitals in Southern California, including CHOC, where Bella has spent 17 days this year, including her first 12 on the planet. Please read up more about them on our Featured Partner page! I had the opportunity to provide some training to their volunteers last week and they are just a great young organization full of life, passion, and a giant heart.

On the wound care front, things have been going very well for the most part, until today. We had our first sign of a possible Pseudomonas infection in one of Bella's wounds. When I took off one of her dressings, the underside of the dressing was neon green, a color we have never seen on her. Immediately, Ang thought it might be Pseudomonas because after reading about it in a number of other EB blogs and websites, she remembers that is was described as characteristically blue-green, bright green discharge. The interesting thing is that the wound itself didn't look at all infected. I guess the dressing (Mepilex Lite) must have wicked it all away from the wound? Still being relatively new to all this, we cleaned the site twice, but bactroban on it, and covered it this time with Mepilex Border Lite. We'll check it daily to keep cleaning it. I read on one site that Pseudomonas is antibiotic resistant, which if that's true is a drag. We'll be starting to add vinegar to subsequent baths to upgrade the cleansing campaign.

On the Transplant Front, we are officially beginning Bell's "work up" on Monday June 14 in Minneapolis, MN. It will be about two weeks of consults and tests, and then Bella would be admitted to the BMT Unit approximately on June 28. Ali will have her stem cells harvested around July 5th or so. Of course, these dates are approximate, but we are full steam ahead go for the 14th. Ang, Bella, and I will return to MN later this month to finalize lodging, then I'll drive the minivan packed the week prior to the 14th and Grandma and the girls will fly up that weekend. My goal is to have us unpacked and moved into wherever we end up by the time they arrive for the smoothest transition for everyone. I'm really looking forward to driving to MN alone! The last long distance trip I took alone was from CT to AZ in 1995 and it was the quietest 7 days of my life. I felt like I stepped off the planet for a week and just hung out with God. I didn't hurt that I had no radio in my car. We'll see if I choose to crack out on a bunch of books on CD or go for the monastical journey again. Which do YOU think it'll be?

How come I don't get to collect Easter Eggs???

Can I just also share my fears with you real quick? These are things you can pray for as we prepare for this journey. I know that these are just my own fears, but they linger and fester, so I would like to turn them over to you collectively to pray for. Thanks! I worry about Bella and how she wrestles so violently in bed when falling asleep. How's that gonna go with a Hickman line in her chest? I worry about Ang having to focus on her job in a new city each day while her baby is going through such an ordeal, and how much that will weigh on her. I worry about how we will keep Ali happy given I'll be in the hospital room 24/7 and Ang will be working full time. I worry about how I am going to keep my sanity in that hospital room for 50 days straight on little to no rest daily.

Thanks for taking those off my shoulders. I am reminded that this has always been beyond my control, and all of these fears are from me wanting to know how it's all gonna turn out before it happens. I am reminded of the quote, "God is in the results business." I just love trying to take back control over the outcome of everything in my world. Oh, man, that is mentally exhausting, though. Thanks.

I have to take a minute to publicly gush about Ali. Ang was away on biz this past week, and in the past, Ali would seize the opportunity to really out me through the ringer while mommy was away. Well, whatever it was, she has currently gotten it out of her system, and has just been an ANGEL with with Bella and me. I think I gushed about Ali last post, too, come to think of it. She's just been amazing.

Okay, outta here for now. Please go read about our new partner, MUSIC TO HEAL. They are very inspiring, especially because the founder is just starting his third year in med school! Get to know them. They rock. I am just so inspired by both these guys and PUCK as well, and thrilled to be making a difference in the world with them, albeit small here in the beginning. At least we're doing SOMETHING.

Happy Easter to you all and good night.


  1. Tim...
    I am just thinking...
    There has GOT to be a local YMCA or Boys and Girls Club...There may even be a children's daycare on campus or near the college.
    I bet if you work your magic, someone would find a temporary spot for Ali.
    Wish I could pack up and go with you and help :)
    But then we'd have to entertain 3 kids all day...and one of them is Molly, and she's like entertaining 5...
    something is bound to fall in your lap...and it may be right under your nose.

  2. Tim,
    Happy Easter to you and yours! We continue to pray for Bella and your family. Be safe on your road trip, I think you should go the books on cd route.
    Many blessings!
    Doug and family

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  4. As for your road trip to MN, how about alternating days of listening to books on CD and monastic reflection on what you listened to the previous day?

    Hello Ang, Ali & Bella!
    Jim <3

  5. Hi, again! I'm the lady with the MI Paste suggestion for Bella's teeth. Wanted to let you know that we have frequently experienced bright green on the Mepilex Lite patches (with stinkiness), only to see a nice-healing wound underneath and no other signs of infection or problem. Have shown it to our derm, and she was not concerned nor diagnosed as pseudomonas. We haven't been able to figure out exactly what causes it, but seems to do with the amount of fluid retained in the patch (between the exudate from the blister and the Bacitracin we apply to the patch). I hope that helps put your mind at ease! Happy Easter!

    Adrienne Provost
    Palatine, IL
    Mom to Elizabeth (9), Patrick (7), and Caroline (4 - Junctional non-Herlitz EB)

  6. Hi Tim:
    I am new to your blog, but not new to EB. My 10 month old granddaughter Leah (JEB) passed away Dec 31st. I know what your family is going through and will be checking up to see how Bella will be doing with the BMT. God Speed and Prayers will be sent everyday for your beautiful little girl. Take care and God Bless. Love Leah's Nana