Tuesday, July 01, 2008


Three weeks ago, I remember watching Thomas jump around the living room.

"Ribbit," he was saying, dragging his knees under him, "Ribbit."

This isn't so bad, I remember thinking: We are limited by his good days and bad days, but this is still pretty fun. He drew what appears to be a face today, and now he's being a frog. Which is awesome.

It hasn't been entirely downhill since then, but ... have you ever hiked back down a mountain? It's like we've hit the switchbacks. We're cutting back and forth, covering ground that looks familiar, but descending for sure.

Thomas's abilities seem to be stable, but we have had to double his pain medication dose in the last three weeks, and that makes him sleepy. Scott is always coming up with way to fight this frustrating side effect, but let it be said for the record that caffeine does not have the desired outcome. On Thomas, anyway.

The sleepiness masks the other symptoms, but we have begun to see them. I won't list them all here. In fact, it's hard to know what to say. The sad has gotten into our shadows and follows us around every corner.

But then, so does Thomas. I realized that I'd been a little uptight this week when I realized that Thomas had added a "Pursed lips and crossed arms" act into his routine. He was mad at me, but I cracked up. Can't imagine where he picked that up.

Read more!


At 2:22 AM, Blogger kate5kiwis said...

much love X

At 2:34 AM, Blogger Ctelblog said...

Sounds tough. You know how to contact me if you want to disucss anything.

At 3:07 PM, Blogger Jana said...

Thinking of you lately.

At 1:50 PM, Anonymous Anonymous said...

i wish it wasnt like this. but im also glad the little booger knows how to make you laugh. miss you, love you all.


At 1:59 PM, Blogger Mel said...

Must have picked that one up from Ava. I think they get it from T.V. Love y'all.


Post a Comment

<< Home