Friday, December 12, 2008

Dr. Gross, ENT Part Deux

So I know it may come as a shock to most of you that I'm posting again, since it hasn't yet been three weeks since my last one, but we had such a great experience today that I thought it deserved to get written up.

So I've quite thoroughly documented our struggles with Dr. Tiller from Kaiser, the dwarfism specialist from the MAB who "doesn't believe in baselines". Thanks to Dr. Tiller, we're constantly amazed when we don't have to struggle with other Kaiser specialists, and that was reinforced again today with our followup appointment with Dr. Gross. We arrived today with a copy of the results of the followup tymps and hearing tests that the school district had done a week or two ago, and the first thing Dr. Gross did was to go over those with us. She was quite surprised that her tymps were still showing a flatline while her hearing tests showed that she was hearing at a normal level for her age, so she decided to have her own techs repeat the tymp tests. She also did a quick visual examination of Caitlin's ears and thought they really looked like they'd cleared up, so she wanted to re-test and see what was going on.

Of course, I neglected to mention that the "quick visual exam" included Dr. Gross cleaning some of the wax out of Caitlin's ears, which she did not care for at all. Aparrently different ethnic backgrounds have different earwax types, and Caitlin has inherited the "asian" earwax from mommy, which is loose and flaky and is very challenging to remove. This meant that it took several attempts to get it all out, with Caitlin screaming, crying and struggling, leaving Dr. Gross terrified that she was going to damage the inside of Caitlin's ear just trying to get a look!

Anyway, we got Caitlin back to the sound booth for the followup tymp test, which of course she fought tooth and nail, but after several attempts at each ear the tech and Dr. Gross both agreed that the flatline results had to be accurate. We got back to Dr. Gross's office to talk about what the next few steps should be - she was still mystified by the fact that her ears looked clean, she could hear, but was flatlining on the tymps. She asked about the sleep study, and we reminded her that it was scheduled for next weekend. She asked us to find out how quickly they would have the results of the study, because she'd really like to discuss those with us before scheduling any surgery. She said she really didn't feel like being very agressive about performing the surgery for the ear tubes since the ear problems didn't appear to be affecting Caitlin's hearing, but she wanted to revisit the issue when we came back with the results of the sleep study. She also wanted to be sure she didn't ignore the issue, because she wanted to make sure that Caitlin didn't end up with a disadvantage in her speech development through not being able to hear well.

While we were talking about "trip linking" and trying to do the tonsils and adenoids at the same time as the tubes, Cherylle mentioned the idea we'd had (and then rejected) of trying to do the MRI at the same time so that she wouldn't have to be sedated more than once. Dr. Gross then started discussing the procedures for having an MRI and asked us when ours was scheduled! We were both kind of in shock, and reminded her that Dr. Tiller had refused to order one. She then began insisting that she thought she'd ordered one for us. We were absolutely positive that she hadn't, but she couldn't think of why else she would have researched the procedures for kids with achon! Well, after some discussion, and a bunch of digging through her e-mail, she finally decided that she'd only been talking about it, but informed us that if the sleep study indicated any potential central apnea problems that she'd be happy to order the MRI for us. At this, Cherylle was flabbergasted - after all the fighting we had to do with Dr. Tiller just to get the referral to an ENT, here she was ready to give us the tests he'd refused to give us and without a second thought!

Well, I'm sure more will follow - Caitlin's sleep study is next weekend so there will be plenty to say about that. We also have another followup with Dr. Gross scheduled for Jan 23rd, by which point we should have the results from the sleep study. Also, this weekend we're doing a snow day at the grand opening of a local outdoor shopping mall, and following that up we're going to the LA Chapter's Holiday Party that I'm doing some basic lighting for. Ellen and Stuart are hoping to drive up from San Diego to join us for the LA party, which will be great - especially since Ellen thinks that Justin has a big crush on Caitlin - those two are so cute together! There's also a possibility that Cherylle and I will be taking a more inside role with the LA Chapter - we'll let y'all know how things turn out!

Oh, and finally, Caitlin is starting to let go and stand on her own more and more now! She did it for me for the first time Thursday when I was picking her up from daycare - letting go of Miss Lily and waving at me for like 5 seconds before dropping to the floor! She repeated it again for Cherylle today while we were taking her aunt on a tour of the Hollywood and Highland shopping complex, and she started taking more and more chances to let go and stand on her own the entire day! I think walking can't be too far away!

Until next time - here are a few pics from the last week or so :-)

The kids with daddy at Johnny Rockets while mommy and auntie go shopping!

Daddy and Evan freeze our backsides off at the California Living Museum Christmas Light Display - an annual fundraiser they do at the zoo -

A couple shots of Caitlin eating, which she loves to do - notice the ever present waffle in the second shot!

A few from today at Hollywood and Highland after the ENT appointment - the first two are Caitlin being cranky but cute, and the last is blowing kisses at Mann's Chinese :-)

Tuesday, December 2, 2008

Slow to react!

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!

And, of course, a few of her brother since he's such a great big brother and is also totally frickin' adorable, if I do say so myself :-)