Tuesday, November 17, 2009

Just wanted to echo a few of Roger's thoughts in my own post (if you haven't read his previous entry, read that first).

Yesterday eased my mind in many ways.  I was very relieved to find out that for the most part, we should expect the progression of Charlotte's disease to be relatively easy.  I definitely like the idea that she will gradually start sleeping more and more and eventually will just not wake up.  As Roger said, that's the way to go, right?

I am not really looking forward to some of the actions and discussions that will follow, but to paraphrase Miss Scarlett, that is a conversation for another day.

For now, our lives are so busy with activities and engagements.  Sometimes it's hard to keep up.  Our network is keeping us well fed, well entertained, and making us feel loved.  Thanks to all of you who send notes (sometimes with cookies or brownies attached), help us set up activities, or just support us in so many small but meaningful ways. 

It is both bizarre and relieving to have no more clinic appointments.  It was very odd to have the conversation that we did with her medical team yesterday.  For me, it was almost an out of body experience.  Everyone on her team is so competent and dedicated.  Drs. Khan and Tye were holding back tears (a few slipped out) throughout the meeting and I was touched by everyone's commitment to our daughter. 

Right now it seems our biggest issue is sleep.  The problem is two-fold: First of all, Charlotte's sleep patterns are wacky and she seems to be waking up at odd times.  It's hard to tell if her wakefulness is tumor related, medication related, or just weird sleep patterns.  Secondly, both Roger and I are struggling with getting good rest.  Part of it revolves around getting up with her but the other part is that evening anxiety that just seems to settle in.  You get to bed (or try to go to sleep) and your mind just wanders.  It's a dangerous thing.  That's probably the time when I am saddest.  It makes it hard to settle down. 

I don't have much more to say right now so I'll close and try to move on with the day.  Coffee, anyone?

- Rachel (Charlotte's Mom)

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