For Richer, For Poorer, In Sickness and In Health...

It's been a good day so far.  Charlotte is resting peacefully and watching the Backyardigans.  She's not too talkative and doesn't have much of an appetite but otherwise seems to be a-ok.  The tremors actually seem to have lessened significantly and she is not in any pain. 

Auntie Retta has been here since we came up from recovery and just left a little while ago.  She visited with Charlotte (and us) for a while.  It was good to talk, laugh, sing, share stories... drink coffee...

Roger and I got out for a little fresh air and a walk.  We sat in the garden at the Museum of the Confederacy (have you ever been there?  It's a Richmond treasure!) and talked and cried and talked (and cried).  I think that emotionally we are very much on the same level and in the same place and that is a good thing.  We're not in a great place but at least we are there together.  We talked a lot about what our life may look like in the near (and far) future.  Definitely more near than far.  I am so glad we had that time together today.

A week from today, Roger and I will celebrate 12 years of marriage.  While we may not be in a celebratory mood, I think we do have much to celebrate.  This year has definitely made the whole "for richer, for poorer, in sickness and in health" thing pretty real.   At the risk of sounding schmaltzy, I wouldn't pick anyone else to have on this journey with me. 

I have had many favorite scriptures floating around in my head these days.  One of my all time faves, the 8th chapter of Paul's letter to the Romans, was quoted by someone in the guestbook.  My favorite part of that chapter (verse 28): "And we know that all things work together for good for those that love Him and are called according to his Purpose."

Another favorite that has been on my mind was read at our wedding (from Ecclesiastes 3):

To every thing there is a season, and a time to every purpose under the heaven:

A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to
 cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace.

I think that just about sums it up. 

Whew.

I plan to stay here for another few hours and then I will head home for some rest and reprieve.  I definitely feel more at "home" where Roger and Charlotte are but I know a good night's sleep in a good bed will do me a WHOLE lot of GOOD. 

We are still looking at going home sometime tomorrow.  Not really sure when that will be.  Of course, the updates will keep coming.

Love and HUGS (I'm stealing this line from Sherry!) :-)

Rachel

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!

Rog 

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.
Rachel