Saturday, September 19, 2009

Keeping on

Well, Blaise's blood counts did drop again, but we're going to keep with the current protocol for a while longer. We're trying to give the sulfasalazine (the anti-inflammatory) a chance to get working before we do anything drastic. The real issue with all of this is that what Blaise has looks like a food allergy in some ways: right kind of white cells, very typical allergic symptom, flares up in response to changes in diet, but it isn't quite acting like a food allergy: doesn't stop in response to dietary changes, sometimes stops without dietary changes, doesn't improve in spite of a seriously hypo-allergenic diet. To quote her GI doc, "this doesn't make any sense."

But lest you get too worried, here's what the surgeon from the CAIR team (and fellow MIT alum) said upon walking into the exam room on Thursday: "Hi, Blaise! You look great!" She was standing on my lap, happily bouncing. She tried to steal the GI fellow's key drive. She wanted to play with the nutritionist's calipers. She doesn't seem like a sick baby, which makes it all the more frustrating to not know what's going on.

So enough with the downers. Here's what Blaise has been up to while not freaking us out with bloody diapers. She has discovered that by rolling several times, she can go places. Very dangerous discovery, that. She is desperate to crawl, but she just doesn't have the strength in her arms. We're going to try some tummy time on a yoga mat to help her with traction. She's very interested in feeding herself, grabbing for her bottle and trying to guide it into her mouth, even though her hands aren't big enough to hold the bottle itself. She also loves to play with the spoon and tries to feed herself rice cereal. It's a big mess, but it's very fun. I took some pictures of that mess yesterday. When I find the cable for transferring photos from the camera, I'll get them up.


Sandra said...

As an absolute "outsider" I really want Blaise to enjoy crawling. So...I "googled" and found sites that offer information about how parents can help increase upper body strength with "isometric" like exercises. There's a certain "physical therapy" perspective to it. What do team docs have to say about such things?

bjbalas said...

We're leaving the "physical therapy perspective" to our early intervention worker. She's trained to help kids catch up developmentally and has been teaching us plenty of things to do with Blaise. I imagine Blaise's doctors would prefer for us to stick with people that have professional training.