Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Friday, October 29, 2010

Day +36 October 28

Thank you so much to those of you who responded to the EB challenge! Some other ideas for today are to include pictures of Elle to create an awareness flier/fliers, or using one like exampled below from an EB group as a template with DEBRA website included on the blank pull tabs or another that you like.just some ideas...

Here are some good photos if you wanted to create a flier or email. Thank you.  :)


Elle has been doing OK today. We finally got the Z Flow specialty mattress/pillow compliments of Jeremy, the wonderful supply guy...he can hook us up with anything, it seems. It felt good except that we placed it under her after doing a back dressing, changing her bedding, doing a weight, and putting her back on the Prisma machine. She was very uncomfortable for awhile; crying tears, shaking, and reaching for her breathing tube. :(  I know, it made me feel crushed too. We checked for wrinkles, trouble spots, repositioned a little, adjusted her tubes, placed Gel E pads here and there for comfort, and of course added A LOT of pain control,but still she cried. After what seemed like an eternity (although in reality, I think it was only ten or fifteen minutes), she finally settled and closed her eyes. When I checked on her a couple of minutes later, I thought she was asleep but was just quiet with her eyes open. I placed my hand on her forehead and soon she really was asleep, Whew! And she didn't have a repeat episode, thankfully. So since we did so many things simultaneously, it was hard to tell just what the problem was, although I suspect she had to get accustomed to her new mattress.

Her white blood cell counts, cultures, BP, Temps, and weight all stable. Have no biopsy results or definitive plan for ze yeast yet, but at least she is stable, no more problems currently.

Chloe is having fun as usual.  She dressed as a butterfly fairy for Blessing Place today and this evening, upgraded to Butterfly PRINCESS for the kids Big RMH Halloween party.  As she was going down the hall with her grandpa to the party downstairs, he asked if she was ready.  In the words of our Guatemalan friend Edgar, she said, "It's party time!".

What do you get when you cross a blood thirsty Transylvanianian with a good witch? A butterfly princess of course.

That's right, she even morphed into Spider man Butterfly Princess -notice a theme?  She is into spiders this Halloween
Chloe loves the Edlings, here she is trying to force Violet to hold her hand!
Even actual Trick or Treating in the RMH rooms

Vlad had to take his fangs out because he was too scary


  1. Hi Becky: I am so glad that Elle is stable and doing okay. I really love the pictures of Elle. She is so precious and beautiful.
    You guys look like you had a blast at the Halloween party. It must be nice to have some fun and try to forget about everything going on right now.
    Give Elle and hug and kiss for me. Keep the Faith. Love and Peace Leah's Nana

  2. Your family is beautiful! I think about Elle often, she is exactly one week older than my daughter. Sending you all good thoughts!

    Love the Halloween Costumes!!


  3. So glad to see you are taking time for some lightness in your life, that is an important coping skill and so many families in stress aren't willing to do that. Good job, Pops. I am a licensed Marriage and Family Therapist in California and you have identified, and are using, a very healthy mechanism through journaling (blogging) that will not only aid your healing but is truley a service to others who are being educated about EB through your process.

    You have a beautiful family and we wish Elle a speedy recovery.

  4. Hi Steve and Becky,

    Thank you for all of those wonderful pictures of your beautiful baby Elle! I have to admit that one of my personal favorites is the very first picture of Elle in your blog (which is now at the bottom of the blog).

    I posted Elle's photo in my facebook today and linked to your blog here. She is such a beauty.

    Can I just say that the witch and count Dracula make a handsome pair?!

    And a note to the anonymous poster above, I am wondering how to contact you? We need more MFCCs in California that know about EB! EB families need all the support that they can get.

  5. S and B: Love, love, love your costumes, wish I could be there too! Maybe next year Elle can go as baby peeps or a lion or a lobster or something!
    Good job getting your minds off the medical stuff!
    Love all of you, sending positive thoughts your way. Keep up the blogs, they are terrific! Grandma and G.G.

  6. Thank you for sharing your story and all of the wonderful pictures. I'm praying for Elle and your family!

  7. Hi Aunt Becky and Uncle Steve, Its me, Nate. Everyone looks happy in all these great pictures. I'm praying for Elle every day and hoping she'll get better and we'll be able to see her once again.

  8. Steve-you look great-did you do something new with you hair?! Looking good! lol, j/k. love you brother! Chloe- you are a beautiful little butterfly princess spider girl, lovely! Becky, your good witch costume is great, you all look fantastic, happy you had a little fun.
    Happy Halloween!
    We are all praying for you little dolly, we love you!
    Timea and Mikayla :)


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