We spent much of last night trying to decide whether or not to bring Genevieve into the Emergency Room. She has been breaking out worse than usual lately, and her sores have been "different". Normally the blisters don't have much fluid, and lately they've been full. Normally they're pink, and lately been bright red and some even bleeding. She's also had a ton more than usual. Yesterday she was rather lethargic. Didnt want to do anything. Didnt want to sit up. Didnt want to go in her jumperoo or stroller for a walk. Didnt want any of her toys. Just wanted to lay on her back and be left alone. I tried reaching a nurse at the ER twice, only to sit on hold for 20 minutes each time before becoming overly frustrated and simply hanging up. I talked to two of the families we know with similar skin diseases and they said they'd bring her in. By then, Andy had already laid Genevieve down in her crib, and she was already asleep, so we decided to wait til this morning to do anything. I'm now waiting for her dermatologist to get in at 1pm and call us to let us know when she wants to see us to do a swab test to test for an infection. It'll be today or tomorrow. So that's all that is going on...
Here is a picture of her feet from last night....
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Oh, poor little girl, that looks just awful! I can't imagine how hard that will be when she starts walking. I can't wait to hear about your appeal, I hope it goes through fine.
ReplyDeleteoh, poor sweet thing. I really hope your appeal comes through too. Viv needs some relief and so do you!
ReplyDeleteI saw your comment on Rachel's website & I hope you don't mind. I can relate. I have a little one with EHK & my heart breaks for you. Feel free to read about our little guy... http://caseyandkaydee.blogspot.com/2008/10/ethan-ee-than-strong-firm-constancy.html
ReplyDeleteCan I also get the link to that video you posted on July 21st? Thank you for your strength & courage, it's a great example for me to follow.
Did she have a temperature? We had to take Ethan in to the ER before due to a major rise in temp. Luckily it wasn't his skin to blame for the infection he developed & he hasn't had a skin infection yet.
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