This entire past holiday weekend (Labor Day) was up and down for Jaymun and us.
It has been very hard to figure out where his periods of unstable, shaking movements are coming from.
Also, it seems the past weeks his energy level has decreased, and his cheerful, teasing personality
is harder to find. We've had Dilantin trials and tribulations. I think that herbal doses, or the sudden lack thereof make
it harder for the docs to set a steady level. And it seems Jaymun still needs at least a low level of Dilantin.
Since the surgery Aug 30, I had hoped to see more progress.
However, this past week showed only mild improvement, and this weekend things started getting worse again.
It turns out (in hindsight) that there were Thirteen Percent Blasts
in his CSF fluid last Friday, along with the Three Percent blasts
blood. So that was awful news
, and more complicating factors in interpreting his behaviour.
However, one bright spot for today was that this morning, Jaymun's blood labs (CBC) showed platelet levels increasing,
and (leukemic) blasts going down from 3% to 1%. From Friday to Tuesday that is a nice trend.
The other was Jaymun himself. Tonight he turned on the energy level. I'm not sure where it came from. He's been
a very picky eater lately. Tonight, he looked at his food, climbed off his chair to get a different fork, got an extra bun from the counter,
and then ate a huge supper ...everything I'd set in front of him.
Also decided to start calling me Dad instead of Daddy. I'll miss that.
Then he charged around the house laughing and playing. Walked down the hill by himself to join the boys in the sandbox.
Got up an hour after he went to bed, climbed up on the counter and brought me a package
of "mac-and-cheese" to make for him - a 10:00 PM snack. Couldn't notice any unsteadyness or guarding.
So thank you for your prayers.
I'm not sure where this is going, but I know God is never done with us
...He is with us forever so there is nothing to be afraid of.