September 17th, 2010   10 comments

Today marks one week at the UW Childrens Hospital!  There are still many more yet to go, but one down is one down!  Charlotte is really doing quite well adjusting to her new life with a few exceptions (more on that later).  None of us have been back to Columbus since this started last Thursday so life is pretty different for all of us.

She woke up happy again today.  She even ate an acceptable amount for breakfast.  She wasn’t up for more than half an hour before she wanted to do walking.  Amy and Charlotte were in the family room playing with a puzzle when the rounds started.  Amy left her there for a little while with one of the residents looking after her so she could participate in rounds.  Here at the UWCH the team of doctors make rounds every morning to fill in all the members of her diagnosis and treatment progression.  They encourage the parents to attend so we have all the information we need.  Most of the information they present is way beyond our understanding.  They are discussing this amongst other doctors, residents, attending physicians, etc but we just look to Dr Diamond to interpret for us (is she smiling or not?).  According to her, Charlotte’s blood test numbers looked good again this morning.  In case we haven’t mentioned it already, every morning between 5-6am someone comes into the room to draw a blood sample to send to the labs.  The test is taken early in the morning so the doctors have the results to share by the time they do their rounds in the morning.  The last few nights Amy and I were so sleepy we never heard the guy come in! And her blood work said her neutrophils were also just high enough to get her through one more day without wearing a mask.  But it seems inevitable that tomorrow is the day that will start.  Last night we noticed that Charlotte was getting red around the ears and hairline.  It seemed to be itchy to Charlotte so we had to give her some benadryl to minimize the discomfort.  The area looked better today so we will keep an eye on it!

Grandma and Grandpa Wagenknecht came to visit today.  They will be staying at the Ronald McDonald house for a couple of nights.  I will have to include their review tomorrow!

The morning was spent walking the halls and watching television.  Grandma and Grandpa Elske also showed up so the whole clan was here for most of the day. Charlotte also had some visitors stop by and several cards and gift baskets arrived.

I stopped in for lunch again today but Charlotte had already eaten a little bit so she was back to the family area for some TV.  At least it was nice to see her still happy.

She had a decent nap, not too long, not too short.  But once again, woke up from that with a bright attitude.  I don’t know how she does it, but I thank God she does!  She really keeps our spirits up seeing her with so much energy and spunk.

She ate dinner pretty well also and did more walking of the halls for the remainder of the evening.

So more on those exceptions…things kind of slow down a little later here than they did for us while we were at home. Last week she was just getting started with 2-3 different chemo drugs at 8pm.  This was around her bedtime before our stay here so some of Charlotte’s energy carries over into the normal nighttime routine.  For the last couple of days, our evening routine has been extended from 10 minutes in Columbus to an hour, two hours or more!  She is wide awake at night so it is making it difficult to get some rest and still get some free time in.  It is 11pm and I am trying to write this up before I fall asleep as I have just gotten Charlotte sleeping at 10:15!  But as long as she has that energy to keep working the halls during the day, she can keep us up a little extra at nighttime.  I will start to get worried when Charlotte loses all of her energy and desire to leave the room!

Another thank you goes out to our Grandma and Grandpa Wagenknecht.  We really couldn’t do this without your help.

Posted September 18, 2010 by L. Elske in Uncategorized

10 responses to “September 17th, 2010

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  1. Sounds like another great day. Saw Uncle Lyle into Walmart last night with an encouraging smile. Thank you to Amy for taking the time to chat yesterday. Hugs and prayers.

  2. So happy to read it was another good day. It’s great to see Charlotte wanting to wear her clothes again! Aunt Jenny was worried you were cold honey but as a typical 2 year old, I know you will let us know when you want your clothes on. 🙂 Missing you all from Menasha.

  3. Good to hear the little pumpkin is doing better. Could we get an addrress so we can send a card to her. Thanks for the update. Our prayers are with you. Joe & Sue

  4. Missed reading 9/17 yesterday as was at a nursing home working. Read it this morning. Glad that Amy is participating in the rounds, even if she doesn’t understand everything. I am sure that by the time you are through at the hospital I would be willing to bet you will know/understand a whole lot more!

    Continually praying for you all. Glad that the new little babe is doing well too!

  5. So glad your parents were able to stay at the Ronald McDonald House just a few short blocks away from the hospital. Ronnie’s staff and volunteers will take good care of them!

  6. We have been reading your website along with many others from church and just wanted to say you are in our thoughts and prayers.

    Sue and Gwenn Gmeinder
  7. It’s so amazing to hear how strong you all are. Thank you so much for this blog, I only hope it helps you to know that sharing Charlotte’s journey truly puts our day-to-day lives in perspective. Please know the whole extended family is praying for Charlotte and also for you & Amy. We love you!
    Jill, Tim and fam.

  8. just returned from cincinnati where my brother-in-law had brain surgery for a cancerous tumor. while there we stayed at hope lodge run by acs. i received wanda’s email from church and passed it on to the night administrator. she has a group at her church called the prayer warriors and they are praying for charlotte. just thought the more the better. you tell your mom to let me know if there is ever any way we can help.

  9. thanks for sending us the web address for Chrlotte’s blog so we can stay current with her progress. Glad to hear things are going as well (or maybe better!) than expected. Charlotte is such a darling – we think of her often, and are keeping the three of you in our prayers Let us know if there’s any way we can help from this end.

  10. Lon and Amy,
    Our hearts and prayers are with you both. Thank you for the updates. The Kirchberg klan is praying for you and your whole family!!

    greg becky Kirchberg

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