Sunday, June 27, 2010

June 27: Day -5

Boy, are the days running together...

LOL, I have to tell you, Bella slept through the night last night, but I didn't! I was so nervous/anxious/prepared? for her to awaken in the middle of the night (like the prior 3 nights) that I psyched myself right out of a good night sleep! I was laughing at myself at 3:40 this morning lying in bed, unable to sleep. Good for you, Bella. Good job; at least one of us slept!

Well, today we said goodbye to busulfan (yay! no more daily dressing changes for now at least!) and helloooo to cytoxan. BOOOO! Just the name alone portends bad things to come! Bella began her cytoxan at 10 am and by noon was dry heaving. That was a drag. The good news was that we had already upped her anti-puking drugs to near full capacity, so it could have been worse. Also, we started venting her stomach pretty soon after she got the drug to help release pressure in her gut before it blew! Venting is when we attach her G-tube, open it up, and tape a baby diaper to the open end to collect any drainage. This is like just like a pressure release valve. Instead of the puke building up pressure and exploding up through her esophagus, first, it pushes out through the tube. This is VITAL for EB kids since vomiting is B-A-D because it can damage their esophageal lining.

Prepped for dressing changes... Baby Einstein, ON!

We also doubled her benedryl consumption so she is sleeping a lot as a result of that. This is a good thing, because prior to this, she was feeling crappy and unable to shake it. She had a few moments of cuteness today, but mostly she was really unhappy about feeling so crummy. Can't blame her! So, sleep, Bella, sleep. You ain't missing a thing.

All in all, so far, the docs are quite happy with her labs, her skin, her vitals, our wound care, and her side effects. We are grateful for the amazing level of care both Bella and we as parents and big sister are receiving here. They have had at least 1 EB patient on this unit non-stop for two years running, so we don't have to explain A THING. Can I just tell you how refreshing that is? Life is good. God is good. All the time.

A quiet Sunday overall; nothing unanticipated. We knew she'd feel a lot worse today, and guess what? She does. Sure it's a drag for her, but with her sleeping so much today and last night, I simply can't help but feel grateful that she's sleeping through it.

In other news, this month of June we dedicated to giving away half of all proceeds from Bella's book to DebRA from the first dollar raised. Well, we haven't sold nearly as many books as we hoped, so if you haven't yet, please consider purchasing Bella's Blessing: A Humble Story of Providence. It chronicles in bone chilling detail Bella's first three months on earth and how through friends, family, and most of all faith, we came to see her condition as a blessing.

Thank you for being with us.

P.S. Go Germany!


  1. I am glad to hear Bella is sleeping through the crumminess. You and your family are in my thoughts and prayers.

  2. I said an extra prayer for Bellan today when I realized this morning she would be starting cytoxin. I'm glad she's able to try to sleep through that horrible drug. The nurse this morning told me it's the worst chemo drug they give. Our poor babies get several days of it! Just wanted to know we're thinking of you guys on your crazy day. See you around the parents lounge! :)

  3. Glad to hear everything is working out,hang in there,praying for you all!Lydia

  4. Tim, Thanks for your comment on I am new to the blog world and appreciate any feedback :)I hope your little sleepy-head will continue to rest through the coming days and maybe you will be able to get some rest too! I'm glad you are able to follow the games, so you have something to take your mind of all your troubles while you are in isolation with Bella. I am hoping and praying for your family everyday (and all of the children struggling with EB). My husband, daughter Anna and I will be traveling back to the states in July to visit with family and friends for a month and I will continue to try to spread the news about this awful disease and encourage others to act and support the effort to eradicate EB. Best wishes and loving intentions, Laura V.

  5. Hi Tim & Ang:
    Saying extra extra prayers for your Bella today. I sure hope she sleeps through most of the ickiness to come. Hang in there guys, you are doing great!!! Give Bella a gentle hug and kiss for me please. Take care and God Bless!!! Love Leah's Nana

  6. Still praying for and thinking of Bella and all you guys. Glad she's able to get some rest. Hugs.

  7. Blessings to your family and especially that precious little Bella. Praying for strength, comfort, and peace for you all.

    Susan in NC

  8. I love that despite the crumminess (crummyness?), Bella seems to have such peace around her...

    Just keep swimming, just keep swimmimg...
    (we've been watching Nemo lately)

  9. Bella, I hope that one day you can enjoy these simple pleasures that I did today: a relaxing massage and walking barefoot in the cool green grass. That is what brought a smile to my face today and I want you to get to have these experiences in the future. Keep going.

  10. In the quiet night when sleep evades, there is this humble tune that works for me. I know you know it:

    There is a balm in Gilead
    To make the wounded whole;
    There is a balm in Gilead
    To heal the sin-sick soul.
    Some times I feel discouraged,
    And think my work’s in vain,
    But then the Holy Spirit
    Revives my soul again.

    The sin part certainly does not apply to innocent little Bella, but only to old sinners like me who watch and pray with you from afar!

    Love to you all,

    Brian (besquared)

  11. Dear Jesus,
    Divine Physician and Healer of the sick, we turn to you in this time of illness. O dearest comforter of the troubled, alleviate our worry and sorrow with your gentle love, and grant us the grace and strength to accept this burden. Dear God, we place our worries in your hands. We place our sick under your care and humbly ask that you restore your servant to health again. Above all, grant us the grace to acknowledge your will and know that whatever you do, you do for the love
    of us.

    God Bless you beautiful Anabella.

    Lots of Love,
    The Gomez Family