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 :-)

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 :-)

Where it started for us...

Since I still haven't managed to get my backside in gear to finish the blog about Caitlin's experiences over the last few weeks with assesments from Early Start, I thought I'd repost for y'all the blog I posted to MySpace a week after Caitlin's diagnosis, long before I knew any of you all. I swear I'll have the other one up soon! Yes, Jaime, I know you beat me... it'll be there soon! LOL

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Monday, November 12, 2007

My daughter, the little person! Current mood: happy Category: Life So for those of you who don't know yet, which is probably most of you, Cherylle and I discovered last week that Caitlin has Achondroplasia, or "dwarfism" in English. Achondroplasia is the most common form of dwarfism, anyway, and accounts for over 70% of cases. It's still pretty rare, though, and only occurs in one out of every 25,000 births or so. One author I read recently, in a book he wrote about his daughter with the same condition, likened it to Ed McMahon showing up on your doorstep with a check. What this means, realistically, is that she likely won't ever be taller than 4 feet, and will have different proportions than the kids around her. That's it. Sure, that's enough for most people. Looking different than everybody around you is often enough for any kid to deal with growing up, especially in junior high. Not being able to see over the counter at the bank kinda sucks, too. Still, considering all the disabilities that Cherylle sees every day in her job with Easter Seals, that ain't that bad. There are no serious health risks associated with achondroplasia; no shortened lifespan or lower IQ come along with it. In fact, people with dwarfism have a slightly higher IQ on average than the rest of society. So, all in all, that ain't bad. If any of y'all have any questions, please let me know - while I'm still far from being an expert, I've already read enough that the National Geographic channel's special on dwarfism the other night was old news, and I'd be glad to help out. And if you know of anybody that's affected by dwarfism, or has a little person in the family, please feel free to point them in my direction. Till next time! Currently listening : The Real Thing By Faith No More Release date: 15 June, 1989

Just about me, not the kids... sorry!

Well, this weekend was amusing, but kinda sad at the same time. I've been enjoying the amount of time I've been able to spend at home with Cherylle and the kids over these last few weeks of freelancing, especially after coming back from the 5 days in Palm Springs, but this weekend I ended up in Orange County working while she took the kids up to Bakersfield to visit her parents. It's always fun hanging out with the guys on the crew after the day's over, being way too loud in the hotel bar, but it's not the same as being at home with the family. You know this means I'm getting old when I start saying things like that!

I'm not sure how this works with women, since I'm not a girl and never have been in my live, but guys are trained from birth to go out and beat their chests and provide for the family. Staying out late and being independant are kind of expected, at least by other guys, since it proves you're the man and in charge and in control and not too sensitive. Me, though, while one night is fun, more than that and I'd just rather be at home with Cherylle and the kids. This makes me feel old, honestly, but it's an oldness that I'm happy with. I've always been a bit of a party animal at heart, and because of that I've always wondered when I would settle down internally and really be happy with where I am, and it's nice to see that I'm finally doing that :-)

Since I think the kids are much more interesting than me, though, I will end this with a few pics from some of their last few adventures...

Daycare Update:

So Cherylle found several home daycare sites to investigate this afternoon through CCRCLA, which is the Child Care Resource Center of Los Angeles. She called ahead and got two appointments for tours, both in our area, one for $125 a week and the other for $185 a week. Yep, that's anywhere from $300 to $500 less a month! I was running late trying to make it for the first one, so she went inside first with the intent that I would join as soon as I got in town. Five minutes after she'd gotten there, I got a text message saying "No way in HE-double hockey sticks - I'll meet you at home." Apparently from the minute she walked in it was disgusting - the yard was all dirt, the toys (of which there were many) were dirty and in poor repair, the baby bassinet that Caits would be sleeping in was piled with junk "since I don't have any babies right now" and the entire tiny house was buried in bric-a-brac - walls, counters, everything. Our daughter spends as much time at daycare every day as she does awake with us, so there was no way in Hades that we were gonna accept a place that we couldn't stand to hang out ourselves.

Stop two was a bit further away than we were originally hoping, and a little more expensive than we wanted to find, but we figured we'd visit anyway at least to get a sense of what the current home daycare market was like. We pulled up, and it was a beautiful house in a nice neighborhood (nice defined as "one we would like to live in" - not all expensive neighborhoods are nice, just as not all cheap neighborhoods are bad...). We got inside, noticing immediately that she was wearing her cordless home phone (we've been placed before that can't even answer the phone!) and that the home was very attractive and clean. She'd converted her large den into the kid's play area, placing colorful rubber playmats and industrial carpet over the tile floor which made it very comfortable. There were also lots of little kids' toys in the room, but all neatly stored and organized, much of which was no more than a year or two out of Caitlin's age range. She had two playpens converted to infant/toddler cots in the living room next to the den, easily within hearing range of the main area, and a long row of high chairs near the table for mealtime. The backyard was even better - not only were the toys nice and clean, but the lawn had been replaced by one of the high-tech attractive artificial lawns - long, variegated blades of "grass" that was very comfortable to the touch and made a nice, soft, and clean playing surface for the little ones.

Talking to her was even better. Not only did she have many of the same opinions as us on parent responsibility and creating a loving, nurturing environment for the kids in her care, she restricted the ages to 3-4 at the oldest and was a big fan of Sunshine Day Care, the preschool/pre-k program that Evan had just finished. In fact, the reason she had openings right now was because she just had several kids leave to go to Sunshine since they were now old enough for that. She also had a live-in housekeeper/teacher's aide who was there helping clean up while we were taking our tour. And, while we still need to provide milk for Caitlin (since every parent has different opinions on brand, milk-fat content, etc), home-made food (two snacks and lunch) was included in the price. That's worth at least another $15 a week or so, if we don't have to buy any more baby food jars!

The real clincher, though came when we went back into the playroom and she asked if she could hold Caitlin. We'd explained briefly outside about Caitlin and achondroplasia, and the first thing she did when she picked up Caitlin was to lay her down on the floor and start exercising her legs & arms the way a good PT would do. She then asked if we had talked to the Regional Center about Caitlin yet (for those of you outside CA, the Regional Center is a network of centers throughout California who collect disability services funding from the county, state, and federal government and then locate and pay for services for developmentally delayed individuals. Cherylle actually used to work for the Kern Regional Center before we moved to LA!). She then explained that her son had been born premature with a very low birth weight (1 pound!) and had been expected to not only have many health problems, but to never be able to walk. Now, thanks to the Regional Center and its services, he was a healthy, happy three year old who was not just walking but he was running! She told us that if it was okay with us, she would be happy to do many of the same gentle exercises that she'd learned for her son with Caitlin!

As soon as we drove away, we looked at each other and asked each other nearly the same question at the same time - "I liked her - what did you think?"

Whew! One major decision completed... Yay for us!

Welcome to my new blog!

Okay, after posting a 5 paragraph response to Kim's blog last night that actually ended up being about what was going on in our household, I finally decided to get off my lazy backside and start an actual blog myself. Cherylle's probably actually better at telling these stories than I am (God knows she has a better memory!) but she's usually too busy playing Word Twist and Blocky on Facebook to write anything so I guess it's up to me :-)

Anyway, after some minor personal drama with my work situation, starting with getting laid off two months ago, which came as a complete surprise considering they'd just given me a 25% raise on my base salary, I've finally been hired as the new Master Electrician for the Theater program at CalArts. For those of you who don't know what any of that means, a master electrician is the person who takes a light plot (sort of a blueprint for lighting) from a designer and turns in into reality in the theater. CalArts (also known as California Institute for the Arts) is a world renowned training college for people who want to be professionals in all disciplines of the arts. It was actually founded by Walt Disney, who wanted a place where artists would train artists, which is still the way it's run today. If you check the bios of many of the faculty, they either are or have been major players in the professional world. The theater lighting design program, with whom I will be working, is headed by Don Holder, the Tony award winning lighting designer of The Lion King on Broadway, among many other amazing credits!

Along with this big change, Evan, who is now 5, starts Kindergarten next Wednesday! He'll be going to Newhall Elementary for Kindergarten, then getting picked up by Sunshine Day Care for their afterschool program. We really wanted him to not have to deal with transportation at this age, but unfortunately Newhall Elementary does not have any after school care onsite, and we already missed the date for "open enrollment" when we could have applied to transfer him to Valencia Valley Elementary, where the Sunshine site is located. The one good thing is that he'll get to meet back up with one of his friends from Pre-K, Ryan, who will be going both to Valencia Valley for Kindergarten, and to Sunshine onsite for after school care as well.

Caitlin, however, we're not quite sure what to do with yet. We're really happy with the care at her current daycare, at least in the baby room. The two teachers in there, Miss Victoria and Miss Jennean, balance each other really well. Miss Victoria is more the loving grandmother type, and Miss Jennean is the strict one, and between the two of them they're perfect! Caitlin's really done well there, getting bigger and more adventurous, and the low windowsill they have on the windows that look out onto the playground have been exactly the right height for her to practice pulling herself up with, which she's now gotten very good at! We also love the fact that at a child care center like this, they keep track of all her "vital stats" throughout the day and give us a "report card" at the end of the day so we can see how she did. They track naps, meal/snacktimes, and diaper changes, all of which really help us know at home what is really going on with her.

The problems here are twofold, tho. While the $250 a week (yep, a week!) that we pay there is in line with most of the other large child care centers, it's still a whole lot of money. The home day care where Caitlin was before was only $150 a week, although there was no report card and she spent most of the day in a bouncy chair so she wouldn't get run over by all the older kids in the house. I just don't know how to justify that, but I know that saving $400 a month roughly would be really useful now with my new, lower paying job! Eesh...

The other problem is continuity. We would really like to be able to have the kids go to a place that they can grow up in, not moving them around all the time. On the other hand, Evan went to Caitlin's day care center for summer camp this summer, and we were really unhappy with the organization and supervision of the older kids. I know this was a summer camp, which is traditionally run looser, but it was at a major day care center, and where we had been considering sending him to Kindergarten. Honestly, there's no way I'd put my 5 year old in with that group for school - he spends as much time with them as he does with us, and I want the influences on him to be much better behaved! Plus, we've been getting to know some of the other parents at this school, including the parents of some little ones who have moved out of the baby room and into the toddler room, and they're not happy with their new situations either. We've heard stories of kids coming home filthy and obviously not cleaned up over the course of the day, of teachers yelling at the kids, etc... Eesh again! Obviously Caitlin won't be attending past the baby room, which means we have 6 months at most to make a decision about that...

Anyway, I wanna end this on a more positive note, so I'm just gonna out myself as an 80's hair metal fan, and tell you how much I freakin' love Whitesnake. While I was browsing Facebook and attempting to set up this blog site earlier, Fool For Your Loving came on my iTunes library and I just had to sit back and crank the tunes and fade out for a while... man, that was cool!