The Mallinson Adventures: bad doctors

So I've got plenty to talk about, which is not too surprising since it's been like three years since my last post! Caitlin's been cruising like nobody's business, but she's added a few major steps to that - starting with climbing the stairs in our condo, top to bottom! She'd been trying off and on for a few months, but never had the strength to make it more than a stair or two - but about two weeks ago, Cherylle called me while I was upstairs with Evan, and I came around the corner in time to watch her climb the last 8 stairs! The next day I escorted her as she climbed up the stairs, and after making it all the way to the top, she backed back down 2/3 of the way and climbed back to the top! The best part is now she tells us when she's ready to go to bed - right about the same time every night she heads over to the stairs, climbs up a few stairs, then calls me to follow her! It's cute and scary at the same time - scary both because she's climbing stairs, and because it means she's growing up!!

Also, she's been cruising really well on the furniture already, and has been working on walking with her walker and with two hand support both at home and at day care, but she's now getting obsessed with walking places, is walking straighter all the time, and tonight, while she was cruising the front of the couch begging for food from her brother and me, she actually took her hands off and stood on her own for about 2 seconds to clap at something nobody could identify!

She's also picked up a new sign, finally. She's been really great with the sign for "more", and occasionally will use the sign for "bottle" and for "yes", but a few days ago she finally started using the sign for "please" - in her own special way, of course, using both hands down on her belly instead of one hand on the chest, but we get the point!

Also, we've had a few medical advances since then. Caitlin did have an appointment with an ortho specialst thru Kaiser, in order to get the release for OT and PT from California Children's Services, and he seemed really great while we were there. He did a quick examination, explained that while he was not a specialist in dwarfism he'd seen a few LP patients over the years. He did have quite a few patient pictures on the walls with many patients who were much more impacted than Caitlin, so I wasn't too worried. After his exam, he told us that he thought Caitlin was in great shape, was developing well, and had good muscle tone, and asked us what it was that we wanted to know? We explained that what we really needed was a referral from an ortho specialist for the OT and PT, and he immediately grabbed a prescription pad and wrote out a prescription saying "DX Achondroplasia, RX OT and PT as needed" to give to CCS. All well and good, right?

Nope - Karen Bell, our service coordinator from the Early Start program took the scrip to CCS, who promptly informed her that the wouldn't accept a scrip, that they needed a full diagnostic workup from the doctor, which of course they hadn't told us before we got there. Then they claimed that they had followed up with the doctor's office, and said that his notes from the visit stated that Caitlin did not, in fact, need OT and PT, and therefore she was ineligible. Karen has tried to follow up with the Kaiser ortho's office repeatedly, and despite the signed release we've given her, they've refused to cooperate with her. Again, Kaiser can really suck sometimes.

However - we do have a sleep study scheduled for Caits on the 20th of December. We're not really looking forward to it, since we've heard from the many parents in this community who've already gone through the process that it can be miserable, but we're really looking forward to getting the results so that we can clear up the issue of what is causing her to wake up at night. Heck, as much as I snore, and wake without feeling rested, I may try to get myself scheduled for one of these too! Anyway, Caitlin's tubes are on hold until we get the results from the sleep study so if she needs to have her tonsils and adenoids removed we can do all at the same time... We're not looking forward to her getting surgery, but we're really looking forward to her being able to hear better and start having her words take more shape! She's making lots of sounds, and many of them in appropriate places, but most of them don't have any actual distinctness to them since she can't actually hear the sounds we're making very well...

Anyway, to wrap this all up, we may be becoming much more involved in our local chapter soon - more details on that will follow as they become available. Also, we've officially made our deposit for the national conference in New York, so that means we're committed to going! It looks like the important dates for the conference itself are Saturday, July 4, thru Wednesday, July 8, so we'll probably try to stay those days in the conference hotel and then look for a cheaper place to extend our stay a few more days... We'll see how it works out, but we're really looking forward to meeting many more of y'all (even the ones who moved away recently, Kim!!) since the Detroit conference was such an amazing experience.

I'll end this with a few more pics, since those of you who are not on Facebook may not be up to date on what Caitlin has been up to... See y'all again soon!