September 19th, 2010   9 comments

It was between 7 and 7:30 am today when Charlotte was waking Mommy up.  She was hitting Mommy lightly in the face and saying things like, “Fan off, TV on, wa-wuz (water), Daddy-shirt on”  Amy and I just wanted to sleep in a little bit but she was having nothing of it.  She wanted up, she wanted to eat a snack and she wanted out of the room.  So we started our day with her being a cute sassy girl and that made us feel nice.

She had a little package of fruit snacks before we ever got her out of bed, and was ready to watch Bolt on TV.  We ordered her a nice breakfast and, per usual, she didn’t eat much of it.  But she was ready to get up and go so we knew she was still feeling pretty good and we weren’t terribly worried.  Again, she wasn’t interested in taking her oral meds, so we still have a little fight on our hands every morning and night.  Grandma and Grandpa Wags showed up one minute after the struggle but let us take our showers while they entertained pumpkin.

She was perfectly willing to wear her mask when we were out in the hall.  Her CBC numbers were pretty low this morning (as expected) so we think she will have to get used to the mask if she wants to spend time out of her room.  G&G Elske came again this morning with more mail and cards!  We were able to unhook her from her IV again so she walked down the halls and played in the playroom like any normal 2 year old would do.  The morning was spent with Charlotte alternating between playing with puzzles or legos or walking down the halls with Mommy and Daddy or each of the Grandmas and Grandpas.

She has developed a cute little way to make the hall walks a little more interesting.  One trip down the hall, she will count the pictures of the birds on the wall and that is all she will pay attention to.  The next trip she will walk down the halls and try very hard to keep one of her hands on the hand rail.  She doesn’t need to use the handrail to balance herself, it is even quite high for her to use, but she loves to just keep touching it.  For another walk, she might pay more attention to the marks/designs on the floors and completely ignore the rails or the birds.  I think it is her little way of making each hallway walk a little different from the last one…even though the start and end point and everything in between is the same.  She really appears to be coping as well as we could have ever asked.

She got weighed during her morning and clocked in at 24.6lbs, down from the 25.5 she was a week ago.  She just isn’t eating and drinking as much as she should.  I hope that the Doctors see how active she is and don’t automatically think that she is just laying there in bed losing weight.  We would love for her to eat a little more as we aren’t thrilled with the idea of a feeding tube.

The doctor stopped in over lunch as Charlotte was eating the M&Ms off the tops of the cookies and said her numbers were ok-going down as they should.  He said it was a boring, nothing to report, kind of day.  We will take that!

She went down for her nap as G&G Wags said goodbye.  Grandma may be coming back this weekend so Charlotte won’t have to wait too long to see her again.  They took Broadway back to Jackson for the week.  We can’t thank them enough for watching our little man all week!

Charlotte (and Mommy) took about a three hour nap and woke up refreshed and full of energy again.  Now we understand why Dr Diamond said that many children actually feel better while on chemo because it is killing off the cancer that is making them miserable.  I hope this means it is all working for Charlotte.  She sure has showed no signs of slowing down over the last several days.  Again, we will take that!

Charlotte played and walked more after her nap.  We ate some dinner, she didn’t have much more than several french frys, but she did eat something.  After dinner, it was more walking around and exploring.  G&G Elske left for home so they wouldn’t be up all night and Amy and I were with pumpkin again.  She played nicely in the family area dumping out puzzle pieces and putting them back into their boxes.  We had another three oral meds to give her tonight, the tylenol she took well, and we had to kinda force the other two.  The appetite stimulant, which she hates and threw up from last night, was switched to a tablet that Nurse Amy crushed up into a powder.  We mixed the powder with one of Charlotte’s favorite snacks-chocolate pudding.  She actually took that pretty well.  So hopefully this can continue in a pill form that we can mix with a snack or food.

She is still trying to settle down for the night, and I might actually get this thing posted with enough time to get some sleep tonight.  Life is starting to settle down here a little bit.  Dr said to expect the next couple of weeks to be a little trying as many kids start to feel weak and whiny as the chemo treatments end and their bodies are rebuilding themselves.  I hope Charlotte can continue her wonderful attitudes and make Mommy and Daddy not only proud, but hopeful.

Thanks to both sets of Grandmas and Grandpas today as our appreciation of their love, support and company may not always be evident, but it is steadfast.

Posted September 20, 2010 by L. Elske in Uncategorized

9 responses to “September 19th, 2010

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  1. Thanks, Lon, for these continued updates. Charlotte & you guys are so much on our minds these days. Charlotte was again on the top of the prayer list in our church this weekend. And every day we pray that the Lord is working through the doctors & meds and healing Charlotte’s tiny body! Keep the faith..

  2. I love hearing about how Charlotte varies her focus during her walks in the hall. She’s such a creative, resourceful gal! I’m reading your updates every day and sending wishes for luck and health and patience your way. You all are being so very strong.

  3. Your entire family is doing an awesome job! Keep the faith. Sending lots of prayers from here.

    Kim Kirchberg Lafler
  4. Prayers and only good thoughts coming your way from Sturges St. You’re right Lon, no news is good unless it is good news. She is showing us all what a strong little girl she is and how very much she is loved. As hard as this is, you and Amy are doing a great job. As always, anything we can do, just call.

  5. I love how she takes her walks down the hallway!! 🙂 I am praying for you guys.

  6. Thank you for keeping us updated with this blog. You are in our thoughts and prayers. Charlotte is a strong little girl, and still seems to be finding fun and adventure when she can! So brave! Please let us know if there is anything we can do.

  7. Holly and Justin told us about Charlotte’s illness and explained how you were related to them. We are Holly’s parents and we are praying for Charlotte and your family. I have read the blog every day and pray that good news follows as the Lord is hearing all the prayers for Charlotte.

  8. Charlotte has the most wonderful Mom and Dad in the world. Keep up the good work! Although you both continue to thank all the others in your life and her life, she is very lucky to have YOU.
    Prayers and Hugs,
    Theresa

  9. Our helaing thoughts and prayers are with you all. Charlotte is a strong little girl and we are thinking of her often.

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