Friday, January 23, 2009

January 23: Updates

7:22 AM, CST

We have been receiving many, many messages from children or parents of children (both known and unknown to us) telling us of the kids' concern for Charlotte. These kinds of events, besides being terrifying (some of the worst moments of my life, actually) for the immediate family, can be very stressful for the other children in the patient's life.

Some of our friends have come up with great, creative activities to help kids (and adults) cope. Auntie 'Retta is the mahstah of that sort of thing and her star tree will now be a fixture in CJ's room forever.

Charlotte's friends from school and the Slash Cottage neighborhood have sent pictures they drew, colored, or help create and they will also be going up. It all helps.

If you have a child who might be having trouble dealing with the events of late, please have them color a picture or write a story or build an art project or record a song (don't be surprised if it ends up on YouTube!). Please feel free to use the guest book to share ideas of cool, cheap, easy coping mechanisms for children. I'm sure there are tons of websites dealing with just this.

I'll look for some later. In the meantime, things went well enough yesterday that I'm going into the store to teach this morning! YEAH!


8:20 AM, CST

Charlotte is in and out of sleep. She seems kinda "grumpy" right now and I don't blame her. she aked for chocolate pudding this morning! Told her she could have some after they take another picture of her head. Just waiting for rounds and for doctors to give an update on MRI schedule.

Thanks to Roger for his post and for posting the photos. That princess pic is a favorite of many.

1:33 PM, CST
She had a decent morning. The steroids have her a little "puffy" but her color is good. She is still on morphine so she is groggy but she keeps talking or trying to talk. She is looking at all her pictures, talking about her friends, and she even tried to tell the "interrupting horse" joke (ask Roger about that).
She is in the MRI right now and it should be about an hour or so. Much easier this time as the anesthesia went straight into her IV.

Our doctor put us in touch with another family that has gone through a similar experience with their daugther. Started when she was 18 months. She is now 4 and cancer free. Just checks every 3 months. They actually live in the Fredericksburg area. We shared stories and exchanged contact information so they will be a great family with whom to keep in touch. I will post THEIR caring bridge link when I find it. Already gave us some great perspective on the journey we have ahead.

On a fun note, a toilet leaked on the PICU and flooded the whole side where her room is. We have had to move to a new room so there will be a new number directly to her room. I will post it when I know it. You can always call the main MCV hospital number and they will direct you to her new room.

More to report later.

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