September 24th, 2010   7 comments

***Sorry for the late post.  A particular little girl did not want to go to sleep tonight and both Mommy and Daddy fell fast asleep waiting for her to do so***

Charlotte had a somewhat restless night last night.  Starting at about 3am, Mommy could feel Charlotte’s little feet moving around and her hands rubbing her head.  She just seemed like she couldn’t get into a good deep sleep and eventually would sit up and just start talking to Mommy.  She was in a good mood, just seemed like she couldn’t sleep (almost like a mini case of insomnia).  At about 6am, she started acting like a fever again and Mommy again called for the RN.  Her temperature was only about 99.2 F at this point, but combined with the lack of sleep, she was not very happy.  Within an hour or two it was up to 100F so blood cultures were drawn again and Charlotte was given Tylenol that immediately took the fever away and she was soon ready for her Eggo waffle….something she has really missed here in the hospital.

Because it was his last day here, one of the residents gave Charlotte some balloon animals to say “goodbye”.  Too bad latex is not allowed in the hospital and they had to take them from her when she wasn’t looking!  She didn’t seem to miss them though.

Her urine culture from yesterday showed blood in her urine, but was negative for an infection.  The doctors feel that because her platelet count was so low yesterday (before the transfusion) it caused the blood to be found, but requested another urine sample this morning just to make sure.  Poor Charlotte (and Mommy) had to again endure the dreaded plastic bag being stuck to her.  Charlotte again only wanted to cuddle at this time, but we obtained a sample within the hour this attempt and Charlotte was ready to leave the room and get walking when Gma E arrived.  The OT found us walking and allowed Charlotte to play in her therapy room for a little bit.  Charlotte was overjoyed to have found a basketball hoop in there to play with.  It was wonderful to find something else a bit more physical and active to do as you can tell she is getting bored with just walking the halls.

When I stopped home for lunch, Charlotte was happily playing in the play room with Grandma.  She didn’t really care that much that I was there.  So I warmed up our lunch (#13 over Fried Rice from the Blew Inn-Thanks Grandpa E!!!).  She continued to play nicely, even while there was another young boy in the room…she had a little bit for lunch, mostly grapes of course!  And was ready for a nap very soon.

She was ready for walking when I came home from work, and we made several rounds up and down the hall.  The nurses even gave us a new IV pole, one that tracked nicer and didn’t squeak nearly as much…I figured we were entitled to one of the nicer ones since she is doing an awful lot of walking and we will be here for a while!!

Charlotte’s rash also seemed to magically disappear overnight.  There is still a slight bit of it showing, but for the most part it appears gone.   (Mommy and Daddy again noticed it at about 7pm on her arms, but it again disappeared by bedtime).  It still seems to be puzzling the medical staff.

Overall, today was a very good day that felt “pretty normal.”  We did a lot of walking “around our neighborhood”, Mommy and Daddy had a Friday fish fry from the cafeteria like we enjoy, and Charlotte was a very feisty two year old throwing things and telling us no.  We look forward to more of these days ahead.

I have also updated the “what can we do” page with more information about a bill in congress that could benefit the bone marrow registry. Please check it out.

Posted September 25, 2010 by L. Elske in Uncategorized

7 responses to “September 24th, 2010

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  1. Good to hear things are getting better. Glad Charlotte is back to walking more. She is such a brave little girl.

    Joe & Sue

  2. I love the first picture! It looks like Charlotte is lifting weights. And her crown shirt is adorable. I know our Charlotte likes the bling! Glad the day got better again. We continually pray for better days ahead! Sending hugs from all of us!

  3. So happy to hear that things are looking up! We look forward to these updates every day. Thanks so much for keeping us informed.

    Such a happy little girl! Love, Dean & Sharon

    Auntie Sharon & Uncle Dean
  4. Hello Elskes:
    All the love and prayers possible from Mary and me. We maintain daily prayers for Charlotte as well as for you and all family members. Brandi has requested a bone marrow kit as she recognizes the need and the importance of doing whatever possible to help.
    Please know that we love you – keep the spirit, as our prayers will continue until the glorious day when all is well.
    The Bakers

  5. When I saw the first picture I thought Charlotte was lifting weights! You go Charlotte! Get strong and beat that leukemia!! Going to church now…we’ll say some extra prayers for all of you.

  6. Hello Elskes-We keep thinking about you guys. It is nice to hear all the updates. She is a strong little girl. We continue to think of you and pray for you.
    Angi, Rob, Makenna and Carston

  7. The last photo really tugged on my heart… Peanut looks so sad standing behind the door–almost like she’s scratching to get out.

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