Change of plans...

We were supposed to be going to Cincinnati for the day on Monday, for an appt that was at 1. BUT... When we got his bloodwork back, it was apparently pretty poor. One test related to his immune function was bad (they want the number 0ver 500, his was 240). Therefore, he's even more susceptible to infection than previously thought and needs to get a replacement product that's an IV infusion. Now we need to be down there most of the day, and are going down Sunday afternoon.
More later, sorry.

Micah signing time, part 2

Blogger isn't as forgiving as Facebook, so a longer clip (volume 1) is on Facebook :)

Easter!

New meds..

Micah seems to be tolerating his new meds well. No problems so far. We're waiting to get his first round of bloodwork back.

Fun from our FUN Ohio Trip

Some info...

So, this new medicine came with a little stronger warning from the Hematologist/Oncologist than we'd previously heard. This medicine is her 'baby' so to speak, she's overseeing the clinical study and the kids not on the study as well. We're back to being "on high alert" when it comes to sickness and germs. The first 8 months of his life were that way, and to a lesser extent, this last winter. But, back to high alert. We're thankful for the fact it's spring and there's less going around now than a few months ago. But, we were looking forward to getting out and doing group things... which isn't going to happen now... For at least a couple more months.

The docs want to know anytime he gets ANY type of illness. Luckily, our Ped knows us well and does not hesitate to see us anytime something is up. He's a great partner to the Cincinnati crew.
Therefore, we will be cutting our outings at church down at least a little and not taking him to the store as much as possible. Luckily the majority of youth stuff is outside in the summer, less likelihood of getting exposed to germs.

But... if you're sick, your kids are sick or anything like that, please keep your distance from Micah.

Anyways, enough depressing stuff, here's the cute kid. He's such a trooper! We've been to Cincinnati 3 times in 8 days, and he really hangs in there for us. It would be nice if we lived closer, but at least we're not any farther away!

Well..

I haven't updated in awhile because... wait, need to go to cincinnati.... alright, we're back. Micah just KEEPS draining. Surgery was the 3rd of March.. oh, back to cincinnati... So it's been 5-6 weeks now, and still draining... here we go again! So they put a drain back in and are trying sclero for another time.... off we go! And then another time! into the wild blue yonder... And then they'll try the rapamyacin, probably early next week. So that's our update!