Sunday, December 6, 2009

Well, it's Sunday and Bella's foot is going into a tough phase.

We opened her bandages Tuesday and found the largest blister we've ever seen on her. (See video). Through it all, she never made a peep that anything was hurting her. So, we drained it and wrapped it and expected it to start to bother her right away. Well, it took a couple of days for the hood of the blister to start to break down, and now it's really bothering her. We're looking at probably 4 weeks of pain before it heals completely.

We had been very lucky in that for quite some time we didn't need to medicate Bella for dressing changes. Time to reintroduce our friend Mr. Tylenol. We are grateful that she is not allergic to pain meds as our EB hero Sam is. I can't imagine what she's gone through. She is so strong. YOU are an inspiration, Sam! We installed a mobile over Bella's changing counter as well, and she LOVES it. We only wind it up when she gets upset, and you just wouldn't believe (or maybe by now you would) how fast the music returns a smile to her face. We also keep "You are My Sunshine" and "The Belly Button Song" (we like to call her Belly) on hand to sing to her whenever the smile turns south. Thanks to Grandma for getting her hooked on "you are my Sunshine!" She LOVES it!

Also, the other day we lost 3 fingernail/toenails in one dressing change! That was kind of sad. Bella's nails are swiftly falling off her toes, and she's lost her right thumbnail, and the left pinky nail is on its way out. That's kind of a bummer. We didn't expect her to lose them so quickly! We weren't even sure if she would lose them or not. We were hoping that she would go through the BMT (Bone Marrow Transplant) soon enough to avoid any permanent loss of any part of her body. Oh well, losing fingernails is pale in comparison to losing Bella.

Anyhow, Bella also LOVES the Rudolph the Red Nosed Reindeer doll we have. She wrestles with it and is fascinated by his glowing nose. When you squeeze Rudolph's left ear, his nose lights up and he says a couple of different samples. Bella's eyes get all wide and bright. It's sooo cute.

Bella's grip strength is improving as well, which is very encouraging. We keep the mittens off when playing with her as much as possible so she can get used to using them. She loves her little purple maraca and can grip it with both hands and slam it into her torso, thereby actually "playing it." It's really cute! (See Video)

Lastly, enjoy the first Holiday picture of the girls!


  1. I'm so sorry to hear about the fingernail and toenail problem. It breaks my heart just reading about it. I tried to watch the video but it's private.

    I love the girls by the tree ... they are both beautiful!

  2. I checked back and NOW I can see the video...
    I am so impressed at how calm you and Angelique are in these videos. It's no wonder that Bella is so calm and content.
    You guys amaze me.
    And seriously? Ali's presence makes me smile, even if I only see her tiny legs and a tutu.
    LOVE IT!

  3. Hey Tim,

    I'm not sure what you use on those big blisters, but we've had great luck (GOD) with a vaseline gauze with a thick layer of Aquaphor and then Desitin that we put on Jonah's big spots underneath the Transfer. It seems it helps protect the skin from sloughing off as fast and also helps the underneath skin heal much more quickly. A lot of times by the time the outer skin comes off, the underneath is not nearly as raw as you would expect. Just make sure you use the original Desitin (40% zinc oxide) and not the Creamy (only 10% zinc oxide). If you already know this, just ignore me. Another EB parent passed it along to me. I hope it helps Bella as much as it has Jonah.

  4. I had no idea what the blisters look like until I watched the video. All four of you have a lot to deal with. Despite the blister Anabella was very happy and playful. Long fingers are great for playing piano. Ali was happy and playful too. Both girls are very cute. Stay strong. Love and prayers.
    Russ, Jen, Cody, Casey, & Celeste

  5. too precious...Im so sad that I didn't learn of Bella's blog sooner...but the day I found out I could follow her journey, I was so excited...and became her cheerleader & prayer warrior and looked forward to commenting each night. I just started reading from day 1 of your precious...xoxo, nicole baca