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.  :)

                                      

                                                   

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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