Journal

Thursday, March 26, 2009 7:21 AM CDT

I guess it was about time to take down the Christmas tree?

Sofie's been doing well...her MRI in January was stable, the next is in May. Still on Temodar, although we're currently 9 days behind schedule waiting for the pharmacy/insurance company to get their acts together. I see some letter-writing in my immediate future; to follow up the zillion phone calls I've made in the last week.

Saw the orthopedic surgeon...um...recently. Surgery for the scoliosis will probably be within the next 6-12 months. Her curve has continued to progess, even without growth hormone & the surgery she had a year ago (which was, officially, unsuccessful- the syrinx is just as big). Disappointed that we couldn't buy more time, since Sofie's still just shy of the 4' mark, but it's just not something that we can let get much worse. And, as the surgeon pointed out, she probably wouldn't get much more growth in the spine anyhow, because she had radiation. So, we'll hope for some long legs.

Learning-wise, she's coming along in leaps and bounds. Finally doing what 6 year olds do: reading signs and labels and asking what they mean! I had forgotten that stage. :) She's a mysterious thing as far as that stuff goes & I sometimes suspect that she just picks and chooses what she wants to notice and understand. For example: The TV is usually on the Today Show when we're getting ready for school in the morning. I always assumed she was paying no attention, grown up news never interests her, but yesterday she said "What the heck is going on? Matt's not there, Meredith's not there, Al's not there...who are all these people?" HA! I don't even notice who's there or know their names. And today, "MOM!!! Matt's back!" If this doesn't seem strange, I should point out: Same girl who sometimes can't remember her 5 classmates names. Go figure.

The brain is a strange thing. But, I've had a nagging gut feeling lately that Sofie's brain has undergone some sort of recent change. Like its healed a bit & suddenly she's making connections that she couldn't make before? Or her new school deserves a heck of a lot of credit. (They do, either way.)

Also, her foot drop isn't as bad & she's using her left hand again for more difficult things (she resumed writing with her left hand again not long after her surgery, but she was still using the right for things like picking up a glass of milk & brushing her teeth).

I don't know what that means...I'm a little bit restrained with extremely optimistic interpretations, but it's nice to see her progressing, whatever the reason.

PS. Happy Birthday to Harlei's mom!!!

Links:

http://www.fightplga.org/   Pediatric Low Grade Astrocytoma Info.
http://caringbridge.org/oh/harleiparker   Our Ohio friend
http://www.cbtf.org   Children's Brain Tumor Foundation