Pages

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 :-)



14 comments:

Anonymous said...

She is just too adorable! I'm so proud of her standing and walking with her toy. Parker is obsessed with his toy. We qualified for OT & PT through the state (of Maryland) because Parker has a "genetic disorder." Would that work for you?

Good luck!

Unknown said...

Way to go Caitlin! Some wonderful pics. Aidan got free OT/PT through the County Department of Education. That ended after appx 6-9 mos but evolved into speech therapy. When Aidan turned 3 it ended with the County but he was tested on his speech and qualified with our local school district. He now gets speech therapy 1x a week. No referrals needed from doctors.

Alex said...

I am glad you guys finally got the sleep study scheduled! Can't wait to hear the results! I love all the pictures! I need to make our deposit and reservations for the conference soon!

Destini said...

The Early Intervention program in WV doesn't require Drs orders, they have PT/OT/whatever therapy you are requesting come out and evaluate the child to see if they are behind. Trace has been receiving PT since he was about 9 mos old. I love the picture of Caits lying on the stair landing, and the last picture of Evan is great, he looks so grown up! Good luck with the sleep study - remember, new movie, new toy (and make sure they have movie players)!

Unknown said...

She is just beyond cute! And big brother Evan is adorable as well! What a bummer all the hopps you have to jump through to get her the appropriate services...hopefully it will work itself out soon. Good luck with the sleep study. I agree, it's difficult to think of them having surgery, but you want them to be as healthy as possible. Oh and BTW...on your Google news feed there's a blog post from the Albany Times Union - yeah that's me arguing in the comments section with a guy named Dave :-)

The Johnson Family 5 said...

Can I just book Caitlin for the high school prom when Cole is old enough?? We have dibs! She is just too cute and I'm so excited for her latest accomplishments!! You go girl!

Sarah said...

Your kids are both so darn cute!!! She is doing so well and looks like such a big girl walking around with her walker!!! How exciting. I'm so sorry you guys are having such a hard time getting OT and PT! I hope it all gets worked out with as little effort as possible. PLEASE tell me where you got that walker! It's the cutest darn thing I've ever seen and I think Kaela would actually USE it...

Tonya said...

Why didn't they just tell you, you needed a referral for PT/OT? EI, while meaningful, can be a pain!

Caitlyn is doing fantastic!! She has that look only a trouble maker givers! Especially climbing up the stairs!! Teach her how to come down them, backwards!!! That way if she gets away from you...not the Knoah has EVER done this...yeah right....she can get down safely! Knoah's PT taught him that within the first few weeks of him walking!

Melissa Swartley said...

Oh boy! Look out world here she comes! It's so great to hear how well she is doing! Yikes, yep those stair climbing days are pretty scary and they are right around the corner for us too! Way to go on the new "please" sign Caitlin! Your kids are so adorable, love the pic's!

Ever Changing said...

yeah!!! better start to put things away from her reach level, cause soon enough it will all be gone or in the mouth!!!

Greene Family said...

Way to go Caitlin on all of your new accomplishments!! She is so adorable in all of the pictures (the one of her lying on the landing is so sweet!), as well as big brother Evan!
I'm sorry to hear how difficult it is to get PT and OT for Caitlin. I hope it all gets worked out soon!

mejane said...

Finally! A blog update for us non-Facebook members (my husband would kill me if I started that too). Looks like Caitlyn's been busy, there is no stopping her now! The pics are adorable, don't make us wait so long next time. Hope the sleep study goes well! I'll e-mail you guys re the CCS issue.

Kim said...

No---Evan is HANDSOME! My word! If I had a daughter there would be an arranged marriage! Now as for Caitlin's cuteness-ridiculous! She is all smiles. Go her with her new milestones! I am sorry that the PT/OT is being annoying. That truly sucks!
Don't worry about NY-you know I will be there. I mean seriously did you see my FB status today? And I am in full Yankee season by then and with the new stadium,,,and italian food....ok I'll be there!

Charms said...

Its time to get out your running shoes, pretty soon she will be running away shouting " catch me if you can" :-) your kids are absolutely beautiful and im sure Evan is going to have the ladies mesmerized with that charming smile one day ..... soon