Tuesday, May 18, 2010

Living with Epidermolysis Bullosa: the good and the bad

Mommy providing the finishing touch to the right hand...

Hi gang!

First off, we'd like to say a big THANK YOU to ALL who have donated to the "Bella's Book for Babies' Boxes" Campaign! (You can read about it on the Featured Partner page) We have already surpassed our goal, which means that every family DebRA finds out about in the US that has a baby with EB will get a free copy of Bella's book! We donate 100 copies to start out which should last about 4 years, given who few families DebRA hears about each year (roughly 25 or so). Still, they will get the gift of knowing they are not alone, and that EVEN THIS, even Epidermolysis Bullosa, can be seen as a blessing.

Second, I have to say that this disease is simply diabolical. Bella is in Physical Therapy (PT) which is a good thing because she needs it badly. Particularly, her hips have begun to contract, which means unless we intervene enough, she won't be able to stand properly. Can I just say how much THAT prognosis bites? As if this disease wasn't scary enough; even if she survives it, it has the potential to leave her physically disabled beyond the impact of constant blisters. We are working on as much tummy time as she'll tolerate; not just to strengthen her neck and back muscles, but to stretch out her hip flexors. Today, I gave her a deep tissue massage during tummy time in PT, and she spent a good 5 minutes just lying flat on her stomach on the giant cushion from the chaise lounge chair we have in the living room. I could FEEL how constricted her hips were, and she let me work on her for what seemed like eternity. I could sense that she is uncomfortable with her his contracting, and this massage really felt good. I could feel the muscles slowly releasing over time. I of course sat there having a minor anxiety attack that I was going to leave her with giant blisters from the deep massaging, but thank GOD, no blisters occurred.

EB is a conundrum. You work on one thing to prevent another, but then run the risk of creating a third problem along the way. It's like this with just about every decision we make. Ugh. It gets tiring sometimes.

Thanks for listening; and thanks again to all who have continued to stand by us. We've relied on you every step of this journey.

P.S. Here are some pics of the girls' room after its recent makeover. I guess I can't brag about the pimped out room and not show pictures! LOL. Enjoy!

Bella's new digs... which was Ali's old crib-turned-toddler-bed-now-crib-again...

Ahhh yes. You never seen IKEA look so good...

Princesses, anyone?


  1. Ali's new living arrangements are SWEET :)

    ( and not "sweet" like little girl sweet, I mean "Sweet!!" as in, completely awesome!)

  2. Hi Tim: I was reading the blog and when you wrote that you had given Bella a message, right away I thought, Oh My God, isn't that going to cause some blistering. Thankfully you wrote that she didn't get any.
    God how I hate EB with all my being. Keeping up the prayers for Bella and all the other EB cuties. Hang in there guys, you are doing a wonderful job. Love Leah's Nana

  3. Hey Tim!
    I'm so sorry to hear about Bella. If it's not one thing, it's another with EB. Our thoughts and prayers are with you all! See you soon!

  4. SA_WEET!!! Looks like the place to be!

  5. GReat new space for the girls, well done! Our thoughts and prayers continue for Bella and you guys. We love you!

  6. I have been following your blogs for the last 2 months. I am a nurse in an NICU and we recently had a patient with EB. We were directed to your site to help us to understand the disease and parent's perspectives. You are not just any old parent however.... You have i depth knowledge of your daughter and are not shy about it, and that is the best kind of parent there is. Bella is blessed!!! She looks great!! I hope she continues on this path!! We are all praying for you and your family. Go Bella go!!!!!

  7. Be blessed, from a fellow EB patient. I have the mildest form. I am now trying hard to encourage others with the condition or that are just struggling with life's ups and downs....thank you for sharing your story!!! BE ENCOURAGED! www.revneyda.com