Tuesday, June 28, 2011

What you REALLY come here for!

Micah has now taken up golfing, hoping to turn pro by age 3. Okay, I'm obviously joking. He loves carrying the club around though! Over the last few days, he's been showing a little more interest in food, namely ketchup and coke floats. Umm.. yum?

He's finally hit a stretch where he's been healthy for two weeks or so, thanks GOODNESS. If nothing else, I needed a break!

We don't head back to Cincinnati til July 19th, it looks like!

Monday, June 27, 2011


Maybe tomorrow i'll feel like updating the long story, but the short story is that we've recieved a few therapy related blows here lately, and am looking for a new speech therapist. And a signing teacher if we can't find a speech path that signs. We're also toying with a new diagnosis that is hard to describe. It outwardly looks like a muscle strength issue but is really neurologically based. Is it the end of the world? No. Did it come at a really bad time? It feels like it.
We're also hoping to get Micah's next surgery on the schedule, so I can stop worrying about planning my life around it. Right now there's a solid two months I'd trying to avoid planning anything.

On the plus side, yesterday he decided to feed himself ketchup on a french fry! It's the first time he's really initiated eating anything! MMM ketchup! I'll try get the picture up soon (it's on Facebook).

Tuesday, June 21, 2011

The update, part 1 & 2

The update, attempt two.

As in any college paper that you lose mid way through because something crashes, this isn’t going to be as thorough as it was the first time (this is a pain I know well!)

Last week when we went down to Cincinnati, Micah needed another IVIG (immune related) infusion. His numbers dropped (ideally, at least 400, they’ll accept 350 given the circumstances) from 500 after his last one to 300 in about a month. The infusion is about 4 hours, which makes a bummer of a day.

The jury is still out on the rapamycin. It did its first task well, in about a month. It’s immune suppressing, specifically related to viral infections and pneumonia. Coincidence or not, he’s been sick 3 times since starting the medicine two months ago. With the high risk, even a cold means a trip to the pediatrician, a chest x ray at the hospital, and a round of antibiotics. YUCK! The medicine can have a secondary effect in some cases of reducing the size of the mass. Key word, sometimes. It also can take 6 months plus to see this. We're left to decide whether it's worth it. It'll never replace surgery, I'm sure but could delay it, or at least maybe part of the surgery.

Oh, baby is up. That was two parts of 5 that I had written. It’s a start.

The post I don't want to write...

Apparently I'm not meant to write this post. I just spent about 40 minutes typing, only to lose it all. It didn't save, nothing. I went to hit post, and lost it. Can't find it anywhere. (Even though it's auto-saved 3 times in the last 6 minutes).

I can't believe it.

Tuesday, June 7, 2011

Sunday, June 5, 2011

I promise, I didn't forget you

So, I didn't forget this, I've neglected it. I suppose that is worse.
I'll do my best to get to it on Tuesday. I've got lots of pics to put up, I just have to get the time.

We are headed back to Cincinnati next Monday for the day. He needs another infusion to keep his IGG (immune-goblin G.. that's really not what it's called) up. It's been 6 weeks since his last one, it'll be 8 by the time he gets it.

But for now, I really should go home, because I should have like a half hour ago.

Tuesday, I promise!