Sunday, May 3, 2009

From April 20th

Sorry there hasn't been an update for a while, haven't had access to a computer. There should be more regular updates now, Monday-Thursday since I'm back at work. It's a good thing because Harley's doing well enough that I'm able to, but also upsets me because I can't keep as close of tabs on her. Anyway, she was moved to a normal pediatric floor, and I HATE IT!!!!!!!!!! We don't have any of our favorite nurses, they don't check her as often, and when one of her machines goes off, (unless it's her vitals) they can't hear it, so it just goes off forever or until WE call them and let them know! They don't change her diapers as often, bathe her, OR brush her teeth. They didn't even tell us we had to do all this, so it took me a few days to realize it. URRRG! I understand she's not in critical condition anymore, so she doesn't need as much intesive care. I'm very happy and thankful for that, too! I just don't like her being 'ignored' when I'm used to her either having her own nurse or sharing a nurse with just one other kid. Now it seems it's one nurse to 10 or so kids. I'm selfish, I don't wanna share!!!We have had one REALLY nice nurse. She's our weekend day nurse, Maria. She's been VERY helpful and nice, she's been showing us basically how to take care of her if she goes home on a feeding tube. DOESN'T MEAN SHE'S GOING TO, but she's just figuring in case she does, she'll give us some practice giving her meds through the tube, cleaning & refilling the formula bag, etc.She's also been doing good in therapy. She has a physical therapist, an occupational therapist and a speech therapist so far, soon to add a neurological therapist. She's already starting to get her muscle mass back a little, but it's a long process until she's (HOPEFULLY) back to walking, talking and eating again.Oh, and the REAL kicker: she has CHICKEN POX. She started getting red bumps a few days after the EEG (brain wave monitoring probe sticker things) were removed from her head, so we figured it was just an irritated rash, but then they got worse. They look NOTHING like chicken pox, but that could be becasue she got the shot, and apparently if you still get the pox after the shot it changes the look of the marks. Never heard of that until the infectious disease doctor told us. Speaking of which, she has so many doctors I can't keep them all straight! Neurologists (she's had 3 of them so far plus a whole team of 'helpers', I guess you'd say), Infectious Disease Doctors, Movement Disorder Neurologists, Geneologists, plus all the normal hospital pediatricians and intensivists that work on the floor in the pediatric units. And all the nurses and nurse's aids, too. There are so many people involved in Harley's care and I am SO greatful for all of them!!! Once again, thank you all SOOOO much for your support, thoughts and prayer. I do believe with all of us rooting for her she's pulling through this all. She's my little fighter, and she's already amazed the doctors at the hospital

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