September 29th, 2010   5 comments

Pajama Day!

Charlotte woke up bright and early at 7am, but agreed to snuggle with Mommy until 7:30am.  She just couldn’t wait anymore as she was hungry!!!  She again ate a fairly good breakfast and then was ready to go play.  The doctors have agreed to switch some of the timing of her meds and decrease some of her fluids so that she is allowed to be “tubie free” more.  Mommy failed to realize yesterday that Charlotte was out of outfits, so today was pajama day as Charlotte got to be comfy cozy in her monkey pajamas all day.

Charlotte’s numbers continue to remain low (although you wouldn’t know by looking at her).  She was quite active today.  Just in the morning alone she played ball with the staff, drove the shopping cart through the halls, completed some treasure hunts, ran down the halls trying to catch Mommy to tickle her, and ran the opposite way from Mommy when she didn’t want to do something Mommy said to do.  Overall she was an active typical two-year old today.  Today her neutrophils are back to 0 and both her hemoglobin and platelets are still decreasing getting her close to needing more transfusions.  Nothing to be concerned about….low numbers at this point just extends our stay like originally planned.

Dr. Diamond stopped by to state the meeting with the other doctors went well today.  She stated that nothing new was really decided today as everyone agrees with the current treatment plan, but everyone is pleased to know Charlotte is doing so well.  Dr. Diamond did state that they want to research a possible way to test Amy’s blood (which would also include the baby’s blood) to see if they could determine if the baby is a match now.  This way, if the baby is not a match, they can start looking for a potential bone marrow match now rather than waiting until late November.  We were also told by the attending physician tonight that Charlotte’s cytogenetic test results do show she has chromosomal abnormalities that may lower her prognosis.  Kind of a crappy way to the end the night.  It still remains mind-boggling how this beautiful active little girl of ours can have such an evil disease within her.

On a brighter note, several members of Lon’s work (Paragon Development Systems) have been extremely busy in planning a musical benefit and silent auction for Charlotte’s medical costs.  The auction is already up and running and can be found at:

Please be aware that the auction end dates will change.  They will actually end the same date as the musical benefit, but that has yet to be decided. Please share this link with anyone you think might be interested.  More items will continue to be added as donations/descriptions are still coming in. Donations will also be accepted via this site.
If you have something you would like to contribute to the silent auction, you can email Kyle at

Posted September 30, 2010 by L. Elske in Uncategorized

5 responses to “September 29th, 2010

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  1. Thanks for the update Lon. Pray that everything comes together and ccan be spotted right away. She sure does look good. Have a good day little one.

    Joe & Sue

  2. Aww, pajama day, that’s fun! Sometimes we’re in our pajamas all day too. 🙂 Keep the faith guys. Prayers are being said and answered daily. Everything is going as planned and Charlotte is continuing to surprise everyone. Go Charlotte Go! We love you so much!

  3. Beautiful little girl, you just keep on playing, reading and eating! Jammie day sounds like a super way to enjoy a day in the hospital! Love the pictures showing us snippets of your days.

  4. Glad to see that Charlotte is getting her appetite back, and is keeping her strength up, we continue to pray for wisdom for the doctors in treating her, and that that precious new baby will be a match. Thanks for keeping us updated, your always in our thoughts

    Darren & Vicki Weinberger
  5. Amy, had a very nice visit with your mom today 😉 She’s bringing a hug (along with all the other hugs she’s bringing!) She verified to me what a strong mom you are…taking care of both your pumpkins! Great Job mama! Hope your hanging out in your pajamas too! Love you =)

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