For EB awareness week, challenge yourselves a little. Think of some ways to help educate others about the disease. EB families not only battle the obvious pain and heartbreak as a result of the disease, but they do not usually get insurance coverage for wound supplies which can range from 800 - 2000 a month per child for the duration of the child's life. There is so much need and most people have not even heard of the disease -Lets change that! Share Elle's story, website, Facebook page or that of another EB child you know. There are also useful EB websites with links at the right of this blog too.
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| Getting Festive for Halloween |
Elle is having a better day today. Many of her central line ports cultured out no growth (of yeast) for Three to FIVE days instead of positive growth in two days. YES! I would like to give credit to all of the doctors and anti fungals, but I don't know, there have been a lot of prayers for her lately...The increased dose of Caspofungin and Voriconazole, the addition of Simvistatin along with the Amphotericin line locks certainly hasn't hurt. The yeast war is not over, but we are certainly gaining ground. The results came in late and we will discuss the next strategy in rounds. The plastic catheters are going to have to come out but when and how??
That is our favorite news of the day. Other good news is Dad and Stefan actually got out together to watch the World Series at Grumpy's Bar. However, they did not finish, wanting to get back to Chloe and the baby. Chloe and I had a girls night and cuddled up, watched The Lion King, and ate popcorn in the BMT room. We checked on Elle a couple of times before the boys returned and Chloe behaved
so well. She colored in Elle's room with a mask on while I worked on a dressing that needed immediate attention with nurse Courtney. Courtney got Chloe to wear the too big mask by drawing a smiley face on it, sharpie style. A good time was had by all.
I also had a nice visit with the Edlings. Give them your good thoughts too as Baby Daylon is still in a recovering phase with challenges and they are very busy and concerned about him. One of the twins made pumpkin bread and shared with me -sooo yummy, good job Sadie!
Now, I had orders to go to bed tonight so even though it is late, it is still an hour to an hour and a half earlier than usual. Goodnight.
Stefan took a couple of fabulous photos of Elle today. Here they are:
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| Oh those eyes...love them so much |
Love, love, love, the pictures!!! Thanks for sharing them.
ReplyDeleteThinking of sweet Elle with much love and prayers,
Laura (Philippines)
Beautiful Elle... we continue to pray for your recovery.
ReplyDeleteLoving seeing those eyes wide open and alert! Gorgeous and wonderful! Thank you. So glad the yeast is abating. Prayers are the best medicine.
ReplyDeleteHi Becky: So glad that today was a better day for precious Elle. Love the pictures, she is sooooo cute.
ReplyDeleteI have been spreading EB awareness for almost 2 years now, since the day we figured out what Leah had. The hospital didn't have a clue, pretty sad, huh? I hope that this awful disease will be cured in my life time. I would love to leave this world knowing that no child will ever have to suffer from EB ever again. I nice dream to have, right?
Love and Peace Leah's Nana
B and S: Terrific pictures, Stefan! Her magnificent eyes open! How we all long for her to return to the playing, happy , smiling Elle she was before transplant...Good job all of you, StefaN, Becky, Chloe and Gil!
ReplyDeleteGreat you got to a game! so glad for a bit of enjoyment. We love your blog and Aun t LaVonne tells me she checks it every single morning! Love and kisses from Grandma and GG.
Happy to pics of Sweet Baby Elle. Good job Stephan, nice camera work. Thinking of you all every day, looking forward to celebrating Elle's victory over her infections soon. Kisses all around, from Aunie.
ReplyDeleteI just shared this page on FB. Anything to raise awareness.
ReplyDeleteDenise WI
You are so sweet! Thank you for your kind words. Sadie loved seeing her name on the "puter". I'm so glad that Elle is turning a corner. We all pray and think of her throughout the day. I love the pictures! Especially the one of her beautiful eyes...priceless.
ReplyDeleteIt brought a smile to my face to see those gorgeous eyes so bright and beautiful. Thanks for all the uplifting news and beautiful pictures. She is doing such a great job fighting this and good things are just around the corner I can feel it. Love and miss you,
ReplyDeleteAuntie Timea
Horray for the pics of Elle. It's nice to put a face--and eyes--to the news updates. She has grown and it's nice to see her lovely lovely eyes! Thanks for continuing to update us all on Elle's progress, it makes me smile inside.
ReplyDeleteI think also that so many prayers are making some difference in this fight against EB. I am sending this blog address to many many friends so they can know about EB and what an awfull disease it is.
Candace C.
Such beautiful eyes! Blessings.
ReplyDeleteKrista Boyd
Hi,
ReplyDeleteI have never commented before, but I have been checking in on your sweet little one daily since learning of her from Bella's blog. She is absolutely adorable and I must agree with all of the others, it is great to see her pretty eyes open. I am sure that just melts your heart. I am so inspired by all of the EB families. You are so strong as well as those sweet little ones! I had never heard of this disease before but I have become so inspired by all of you that I am hoping to some how make a difference with this disease even if it is just to spread the word and help others to learn more. (hopefully more though). I am praying for your family and Elle everyday. Thank you for sharing your lives with so many others! My mom's name is Elizabeth Cady I read that thats Elle's full name and I was amazed same name (except my moms last name is cady) Was my maiden name. Thinking of you all often Jessie Conrad Arizona