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 :-)

Caitlin's ENT appointment

So I have been seriously laggard in getting this post up - primarily because (as those of you who know me already know) I'm way too obsessed with politics, particularly with certain issues this election season, and have been intentionally overwhelming myself with discussions about them, occasionally to my detriment (and to that of certain loved ones - sorry, RJ). Not to mention the fact that I got violently ill the night after we came home from the appointment, and was wiped out for two days with barely the energy to respond to status updates on Facebook. It would take a power outage that wiped out both our home power and that of cell phone towers to keep me from making those comments! LOL

So, anyway, on to the topic at hand. After our frustrating appointment with Caitlin's geneticist a few weeks ago, we finally managed to wrangle a referral to a Kaiser ENT specialist. If you missed the last post, this was a major point of contention, since the Health Guidelines for Kids with Achondroplasia call for both an MRI and a sleep study as soon as possible after birth, neither of which Dr. Tiller felt necessary to order. However, after several problems with friends of the family who'd seemed just fine before needing surgery, we decided it was important to press the issue. Dr. Tiller still refused to order an MRI, stating that he "doesn't believe in baselines", but finally consented to give us a referral to an ENT to discuss the sleep study. While both of us were extremely frustrated with the struggle just to get simple exam appointments, I really wanted to give Dr. Tiller the benefit of the doubt and assume that his reluctance to order testing was the result of working for an extremely cost-efficient HMO.

Our appointment was last Wednesday afternoon at the Kaiser offices on Sunset Ave in Los Angeles. We have been very fortunate with the level of assistance we've gotten from our Early Start program through the school district - our service coordinator attended the appointment with Dr. Tiller, and we were accompanied to this one by Brenda, Caitlin's speech therapist.

The good vibes began in the waiting room for Dr. Amy Gross, the ENT, where a friendly patient across the room struck up a conversation inspired by Caitlin's undeniable cuteness. He had much good to say about Dr. Gross - mostly telling Caitlin how lucky she was to have Dr. Gross as her doctor! It didn't take long for this to be confirmed by the doctor herself when we got back to the exam room - within minutes she'd established herself as friendly, knowlegable, and plenty willing to listen. She also agreed to the need for a sleep study quite quickly and with none of the drama that had been present at the appointment with Dr. Tiller - which was both a relief, since that's what we really wanted to get out of this appointment, and a letdown because it confirmed the fact that Dr. Tiller was just being stubborn and resistant of his own free will, and not at Kaiser's behest.

She also examined Caitlin's ears closely with her scope, and immediately diagnosed them as filled with fluid. We'd been concerned about this, even though she hasn't been diagnosed with many ear infections, because she still wasn't picking up much in the way of new words, and the ones she did have didn't have much in the way of consonant sounds. She likes to make lots of Ooh and Aah sounds, with some Wows and Oh's thrown in for good measure - dadda, mamma, and bubba are her only words with real consonant sounds, even though Brenda the ST had determined through eating exercises that she was fully capable of using her tongue to make the correct sounds. Dr. Gross ordered a set of tympanograms to verify her visual diagnosis, and asked us to come back after the tests so she could scope Caitlin's breathing passages.

Sure enough, the tymps confirmed the fluid with nice obvious flatlines where there should have been bell curves. When we returned to Dr. Gross with the evidence, she let us know that Caitlin was going to need surgery for tubes if she was to regain any of her hearing. This was disappointing, but not really a surprise. Caitlin's nearly complete lack of diagnosed ear infections had been a much bigger surprise, albeit a pleasant one, but Cherylle had long suspected that Kaiser had missed diagnosing one or two for the same reason that they hadn't caught this fluid in her ears just TWO DAYS EARLIER when we'd been in concerned about an ear infection.

Anyway, we finally took Caitlin back to another exam room where they strapped her down onto a papoose board so Dr. Gross could scope her tonsils and adenoids. As you might guess, this was not a particularly pleasant experience for us, since as soon as she realized what was going on Caitlin started acting like we were attempting to chew her arms off at the elbows with our back teeth. Finally we got her calmed down a bit and the doctor was able to thread the fiber optic scope down her nostril and get a look. She gave both of us a look as well, which was fascinating but not terribly useful since I had no idea really what I was looking at. Actually, I was really amused to see the light from the end of the scope as it glowed through her soft palate while she was screaming at me :-)

Anyway, the end result was that she didn't think that her tonsils and adenoids were dramatically bigger than usual, but that the space for them was really small (no surprise to us!). She decided to wait for the sleep study before making a final determination as to whether we needed to worry about removing either of them. After getting Caitlin unbound from the papoose board, Dr. Gross told us that while it was probably fairly traumatic for us, Caitlin actually handled the process better than most of the little ones she deals with!

Anyway, the final verdict was - sleep study, to be scheduled in the next 6 weeks to check for both central and obstructive sleep apnea, and surgery for tubes to be scheduled in about 10 weeks, which will allow a determination to be made about removing her tonsils and adenoids based on the results of the sleep study, so both surgeries could be performed at the same time, limiting the risk of anesthesia.

Whew - we were blown away by not only how painless this process was, but by how supportive and helpful Dr. Gross was. When I asked her how many LP patients she'd had previously, she said that she'd only had 5 so far, but with her willingness to listen to our concerns we had no problems with her abilities.

Now, our problem is what to do with our geneticist. We have completely lost any trust we had in him. If we had listened to him, and simply been happy with how Caitlin was doing, it might have been another six months to a year before we'd discovered her hearing loss, by which time she could be dramatically delayed in her language development. What else was she missing because of Dr. Tiller's complacency? Now we're actually more concerned about getting an MRI - not because we're any more concerned about her situation, but because we're even less trustful of Dr. Tiller's opinion.

So what do we do? Kaiser has the best coverage for major medical issues, or at least has done the best by us until now, but the geneticist is supposed to be the captain of the team, and Dr. Tiller doesn't seem to believe that we even belong in the clubhouse! Our next major step may be to investigate further what we can do with the Blue Cross coverage I just qualified for at CalArts - I've seen Cedar Sinai on their providers list, so I'm hoping that we may be able to get Caitlin seen down there. Whatever happens we're much happier with how things are progressing for now - we just have to deal with our long term plans!!

Tagged into action

Well, I've been tagged twice so I suppose I'd better do one of these. Yes, y'all know how MUCH I love surveys! LOL

10 YEARS AGO, I WAS…
1. A year out from marriage

2. Planning our wedding

3. Going to school for theater (and even showing up for class, occasionally)

4. Working at Buck Owen's Crystal Palace - which takes guts when you can't stand most country music!

5. Spending way too much time doing theater!

5 THINGS ON TODAY’S TO DO LIST
1. Go to sleep, soon!

2. Wake up and wander the trade show floor at LDI

3. Meet Cherylle & the kids for lunch and wander around Vegas some more

4. Drop the kids off with Cherylle's parents in the adjoining room

5. GO OUT WITHOUT THE KIDS!!

5 THINGS I WOULD DO IF I WERE A MILLIONARE
1. Buy a big house with a good home theater and plenty of storage for my bikes

2. Buy a new Chevy Volt

3. Start my own sweet little theater that only did shows I like

4. Buy a '64 Stingray

5. Invest the rest while stocks are on sale!

5 PLACES I HAVE LIVED
1. Lindsay, CA

2. Porterville, CA

3. Angwin, CA (Napa Valley-ish)

4. Bakersfield, CA (gotta love that central valley!)

5. Santa Clarita, CA

5 JOBS I HAVE HAD
1. Lots of fast food - Taco Bell, McDonalds, Carls Jr.

2. Several restaurants too - City Lights, Sharkey's, Goose Loonies

3. Oh, and Restaurant Runner - which killed my car after a week!

4. Party Lighting guy - celeb parties & weddings, corporate gigs, etc...

5. And briefly, while in college, Waste Water Reclamation Facility Technician!!

I'm tagging Charlene, Charmaine, Sheri & Cat!!

Fun Saturday!

I'm heading to bed and way too lazy to type much, but I've got some pics finally! We hit two events this Saturday, with varying levels of success. First, we drove a few hours east to an apple orchard in the hills called "Riley's Farm" where the Orange County chapter was supposed to meet and pick apples. We got there late, of course, and while we saw a few we recognized who were picking in the orchard while we were riding the hayride up the hill to the main barn, we never managed to connect with the official group. On the other hand, we did meet a really great family from the Bakersfield area, which really surprised us since we didn't actually know for sure that there were any of the LPA in Bakersfield - we're up there once or twice a month to visit the in-laws anyway, might as well stop by!

Next, we drove down to San Diego to meet up with Ellen, Stuart, and little Justin for Justin's 3rd birthday party. Traffic was bad on the way down, and we were way late for the swim party, but the pizza at Round Table was great, as was all the company. April and AJ were there, of course, since AJ and Justin are as thick as thieves, as was Jane and Jake, a new mom who's name I didn't catch but who had a little cutie named Audrey, and a few other kids I didn't know and was too deaf to catch the names of :-)

Since I don't have the stamina to type any more, here are some pics which can speak for themselves. The first is from the apple orchard, the rest are from the birthday party.

Ergh...

So two things came out of our appointment with Dr. Tiller today. The first is that he believes Caitlin is still doing well - her Kyphosis appears to be receding, her muscle tone looks good, and her height (25.5 inches) and weight (18lbs 6oz) are very appropriate for her age. The second is that he is VERY resistant to our requests for baseline testing that according to the "Health Supervision for Children with Achondroplasia" should be done as soon after birth as possible. We did manage to squeeze a referral to an Ortho specialist so she can get PT and to an ENT who will evaluate her breathing, but no more as of yet.

We are so frustrated right now that it'll take much longer to write the complete blog about it. Suffice it to say that I've got another reason to make the new job work - different insurance coverage. CalArts offers coverage through Blue Cross, and as I just qualified for benefits last week I've signed up for employee + one dependant coverage in Caitlin's name. Cedars Sinai is on the providers list for Blue Cross, and I'm hoping that they'll be less reluctant to refer to themselves.

Well, I'm off to a late night gig. Post more later!

There's a difference? I've got no filter!

So Tonya posted a blog today talking about the "Knoah Phenomenon", which is something quite familiar to most of us with dwarf children. You know, you walk around anywhere on the planet where you can encounter people you don't know, and everyone - I mean EVERYONE - does a double take, and stops to stare. Now typically, in our experience, it's not meant as a negative thing. Most often, the reaction we get is some variant of "My gosh, she's so adorable!" We've been kind of proud of that when it comes to Caitlin anyway, but the level of it has really stepped up a notch or three over the last month or so, as she's really hitting that "I'm not an infant" stage in her development.

The line that really got me thinking, and then writing, was Tonya's response to a comment from a friend of the family that he really doesn't see anything different, he doesn't see "small" or "handicapped", he just sees Knoah. Tonya's response, truncated for space, was "Why is it okay in some situations to say something and not other’s? Where is that line people are suppose to have?" Man, I can so identify with that question!!

For some reason, nothing's really considered to be "off limits" unless it's been through a decade or so of public criticism, and even then it's still touch and go. As you probably know, being in a mixed race relationship with mixed race kids still gets plenty of looks, and occasionally, comments. I almost decked a lady in WalMart a month or so back who simply would not believe that the little brown-skinned boy that I was helping try on shoes was my son. Even after Evan called me "daddy" she didn't want to walk away!

It's even worse when the difference is one that isn't at all common. Like it or not, mixed race couples are everywhere, and people are learning to shut up about it. Dwarfs, on the other hand, are usually only visible in movies, and then as a joke at least half the time. Our kids are crazy cute, but part of that cuteness comes from their perceived precociousness - the ability to do things that children their size shouldn't be able to do. This weekend we were at a restaurant and Caitlin was, as usual, being very vocal and proactive in her own feeding, and was looking around the room taking the measure of everything in eyesight, all while attempting to stand up in the high chair without support.

The young lady (probably mid-20's) at the table next to us kept staring and smiling at Caitlin, and giggling at every cute little thing she would do. Finally, the shared pleasure in watching Caitlin overcame the natural separation we all create while in public, and she began to overflow about how adorable Caitlin was. We, of course, had no problem accepting the compliments, because we absolutely agree. Then she asked the dreaded question - "how old is she?" Our answer, of course, was a proud "14 months". We're quite happy with her development - the fact that she's at age appropriate levels for almost all motor skills development is something we're quite proud of!

Her reaction was "I'm sorry - what did you say?" You could tell that she'd heard the response, but it didn't make any sense to her, so she'd assumed that she'd heard wrong. Logical enough, as the human thought pattern goes. We repeated "14 months" and continued smiling. You could almost see the wheels spinning in her head, completely failing to get any traction. Her first response was "Wow!" She struggled for a response for a minute (well, it was actually probably 10 seconds or so, but the awkwardness of the moment made it seem like a full 60) and finally turned to her dinner companion and said "my daughter must be huge!"

Honestly, I almost lost it, laughing hysterically on the inside. We've, predictably, dealt with plenty of the "but she's so little!" type comments as we've been out and about with Caitlin, but this was the first time I'd ever had anybody assume that Caitlin was average and their own child was the aberration! I had to mark that as a truly memorable moment in our lives.

The problem is that one of the primary adaptations that the human mind has developed is the ability to quickly categorize objects it encounters for easier processing. This, starting with the identification of simple shapes in early childhood education settings, is the basis for every high level thought that the human mind is capable of. We create symbols of things in our mind to allow our mind to process and manipulate the symbol in ways we can't process or manipulate the original object, and this allows us to think and process faster. It's why there is some truth to the commonly joked about statement that "all you (insert racial color description here) people look alike to me!". The reality is that our brain categorizes every single thing we see by shape, color, size, etc., starting with the generalities, and if we only see one or two examples of a shape, size, or color, we get them easily confused while the brain tries to figure out where to fit this new example.

I remember working local crew on the Tim & Faith tour many years ago, and being surprised at the t-shirts being worn by the only two African American road crew on the tour. At this point, the typical road crew was white, male, and late twenties to early thirties, so seeing anything that differed from that standard was very unusual. Because of the vast confusion this had caused on shows in the past, they both wore shirts on the front of which was printed "Hi, I'm (insert name, which escapes me after so many years)", and on the back of which was printed, in large block letters, "No, I'm the other black guy". The intent was to have some fun with the fact that they didn't look dramatically dissimilar, and thanks to that were constantly being mistaken for each other, but I thought it was a much more interesting commentary on something that has been both a blessing and a curse for all of humanity.

Anyway, this started as a response to Tonya's post, but ended up developing into something much longer, but really I think I mostly agree with Knoah's PT who said that the problem is when people look at Knoah, or any of our kids, they immediately classify them as babies or infants, and then become completely flummoxed by the fact that developmentally they can't be babies at all. Since we've all heard of prodigies, and never realize that dwarfs start as children, and really do occur in everyday, ordinary families, the brain immediately rejects the developmental age and accepts the visual age. Immediately the brain shuts off its filter, and the owner of the brain starts using its mouth instead.

Anyway, I need to go to a series of production meetings, so lemme wrap by saying we have an important meeting with Caitlin's geneticist on Friday, where we will be pressing to have all the testing done that is apparently standard for other kids with achondroplasia, but was never done for Caitlin, so I will have much to report after that, and we are also heading for the District 12 Fall Regional in San Jose the weekend after. Should be much to come!!

Tata for now...

One last bit about Supreme Master TV :-)

I found the links to the videos for the show I lit over Labor Day weekend for Supreme Master TV! If you're interested, here is how I spent my holiday :-) If it looks pretty, I probably did it. If it looks like crap, I'll be glad to blame somebody else! Hehehe...

Part 1:


Part 2:


Part 3:


Enjoy at your own risk! If you end up vegetarian, don't tell your spouse I was responsible - I didn't drink the kool-aid!

News/ Supreme Master explained

First, the news. Caitlin took her first steps with a walker today! She's been pulling up and cruising on furniture, toys, your legs, etc. for quite a while now, and occasionally we've been able to get her to take a few steps while holding her up by her hands, but today for the first time she pulled herself up on a walker and took about 2 steps before sitting back down on her butt! Cherylle saw it happen several times, but she would never repeat it in front of me... Boo!

All this was happening while I was wiring up some lights we'd gotten from a trip to Ikea a while back, and hanging a canopy over Caitlin's crib. The lights consist of two pink 5-petal flowers and one green bug, and the canopy is made of a material similar to mosquito netting with large leaves and vines appliqued onto it. Her crib is in one corner of her room, so one of the flowers got hung on the wall at the foot of the crib, which is to the left as you face it. The canopy was hung center over the crib and spread out around the perimeter, and the bug and the other flower were hung to the right of the canopy, and staggered for height. It'll all look beautiful when I have enough light bulbs to go around - I didn't realize they were supposed to be candelabra base until after I'd already bought 25w medium screw base ones for the project! Oh well... it's not as if I'm supposed to be a lighting professional or anything...

---------------------------

Anyway, by request, here is further explanation of the cult I spent Labor Day weekend with. Supreme Master TV is the television studio for a religious group that follows the teachings of a lady they call the "Supreme Master" who preaches vegetarianism and green living as a way to achieve heaven on earth. The religious part is a blend of Catholicism and Buddhism, as she was raised Catholic and "found enlightenment" through the Quan Yin method of meditation, as taught to her by an enlightened master deep in the Himalayas. After returning from the mountains, supposedly she "spontaneously" became talented in painting, poetry, jewelry design, and a large number of other things that she sells to raise money for global awareness. The TV station is broadcast on a number of obscure satellites and on the website I linked to earlier. Most of the time they talk about vegetarian cooking, being nice to animals, and protecting the planet.

The funny part is that as big of a hippie as I am I don't entirely disagree with everything they espouse, I just felt like I was the only one not drinking the kool-aid while I was there! I was actually raised vegetarian as a Seventh Day Adventist, and although I've since converted to omnivorism, I can appreciate the desire to be vegetarian both from a health and a "cruelty to animals" perspective. I mean, I love a good hamburger, but have you seen those cattle farms in the California central valley? Disgusting!!

Anyway, the event I was working was a series of musical performers coming together for a concert for the TV station's 2nd anniversary, presented by a couple of B list celebrities, the most outstanding of whom was one of the producers of the movie "Babe" who was inspired to make the film because he thought it would help kids understand that factory farms are bad, as is eating your friends - and animals (even the gross ones) are your friends. Interesting, but so was the bacon and eggs I had last night for dinner. LOL

At some point the show I lit should show up on their website - when it does I'll link that video here so y'all can see some of what I did...

That's all for now!

In Remembrance

I got a phone call from my brother-in-law at 7am the morning of September 11, 2001, telling me to turn on the television, that we were under attack. From then on, I was glued to the screen, in complete disbelief at what was happening. That shock turned to grief as I watched the towers collapse, one after another, while people in the streets fled in terror.

I find it immensely saddening that our country, which tries so hard to do so much good in the world, can be hated so fiercely as well. People offer reasons, both valid and invalid, but there is never justification for hatred so complete that it can extend to a minimum-wage filing clerk who just needed to pay the rent; or to an airline flight attendant who had just given you a cup of water; or to a security guard at the front desk who smiled and waved when workers dragged themselves in to the office in the morning, still sucking on a scalding cup of coffee in a futile attempt to wake up; or, realistically, to anyone who died that fateful morning.

If anything good can possibly be said to come from the deaths of over 3000 people whose only offense was to be in a building that was a symbol of American economic strength, it is that on one day a year, we can put aside politics and just be Americans, citizens of the United States of America, brothers and sisters in the spirit of this great country. For another 364 days a year we debate the meanings, the causes, and the appropriate reactions to the events of September 11, 2001. Today, we mourn together, and we remember together, and hopefully, we grow closer together.


















May God bless you, and keep you.

May God lift up his countenance upon you, and give you peace.

Busy weekend!

I worked way too much this weekend, so I missed most of the fun. My wife's entire family came over for the long weekend! It was absolutely a packed house for those three days, though. We've got a 1300 square foot condo with three bedrooms, the master for us and one for each of the kids. Cherylle's parents slept in the spare bed in Caitlin's room, her youngest brother and his family all packed onto a queen-size inflatable bed in Evan's room, and her middle brother crashed on the couch downstairs.

While I was off spending 30 hours over two days in a small TV studio in South El Monte (not a particularly nice neighborhood!) with a very pleasant but slightly Jonestownian group who believed that vegetarianism was the path to saving the planet, while following a lady known as the Supreme Master, the rest of the family was out having fun. They drove down to the Northridge Fashion Plaza for a day of shopping, capped off with a night at the Wood Ranch Grill steakhouse (while I was eating vege-meats, mind you!) on Saturday, and then cruised to the local mall on Sunday finished off with a trip to Buca di Beppo. At least they brought home leftovers from there!

Anyway, since Caitlin is the reason for this blog, here are the updates on her. After waiting until she was a year old to cut her first tooth, she's now got three coming in at once! Both of her top teeth and one of her bottoms are all coming in at the same time. Obviously it's great to get them over with, but it's making for some cranky nights... Cherylle's poor dad is a very light sleeper, and Caitlin kept him up all night both nights!

We also rediscovered a toy we'd bought for Evan many years ago - a tripod table from Fisher Price designed to encourage standing play. It's got lots of noisy toys around the perimeter, and on one side it has a steering wheel with a gear shift lever that moves a series of alphabet pictures in the center, playing back the name and sound to match each picture. Caitlin loves it! It's exactly the right height for her to pull herself up and cruise around, and she has a blast playing with it, despite the fact that it barely works anymore!

I've got pics, but they're trapped on my phone... for some stupid reason, Samsung doesn't support Macs for sync, so I have to disassemble the phone, remove the micro-SD card, find the adapter to regular SD size, go upstairs and plug the printer into my laptop with the USB cable, and finally grab the pics. Realistically, it's just that I'm really lazy, and collapsed on the couch downstairs with the computer in my lap and a beer in my hand, trying to talk myself into going to sleep since tomorrow's my first day on the new job...

'till next time!

School Districts, Early Start, and Parents' Group, Oh My!

For those of you who don't know yet, Cherylle is a Regional VP for Easter Seals Southern California, a disability services provider funded largely by the regional centers of California, which in turn are private non-profits that contract with the California Department of Developmental Services to provide and coordinate services for people with developmental disabilities. She also used to work for the regional centers, at Kern Regional Center, while we still lived in Bakersfield. That's quite a mouthful, but it means that she has loads of experience already with disability services, and how they are acquired. We knew, partly through discussions from the POLP list, and partly through Cherylle's experience, that Caitlin would qualify for some services at least, so about two months ago or so Cherylle started the process to get Caits seen and assessed by the regional center. However, despite our laundry list of potential complications from achondroplasia that we provided initially, the regional center determined that her diagnosis did not qualify her for services from them. Instead, they referred us to the Early Start services offered through the school district's special education department. Now the reality is that Cherylle knows ways around the early decision by the regional center in North LA, but isn't quite ready to open that political can of worms quite yet. They are one of her major funding sources, after all!

So anyway, we first met with Cindy from the Early Start office in early August, who came to our home and met with us and with Caitlin to do the intake interview. This was basically a screening exercise which allows them to determine if it's worth doing the full assessment. Cindy was very warm and friendly, and was very interested in Caitlin and her condition. We provided her with some of the info from the POLP files, such as the motor skills chart and growth charts, and she really tuned in. She was very interested in seeing what they could do for her!

A week later or so, we got a visit from Erica and Karen. Erica is the Service Coordinator for Early Start, and Karen is our case manager. The two of them also came to our home, chatted with us, and observed Caitlin for about an hour and a half. Again, they were very friendly, and very interested in learning about Caitlin and about achondroplasia. They had a lot of questions, and paid close attention to the answers. We had lots to say, of course, and they paid attention to that as well. I printed out everything I could find on achondroplasia, and they were very excited to receive it. They really seemed interested in what our concerns were for Caitlin, which was nice to see! They took lots of notes, and set up an an appointment for the followup, when we would work on the IFSP or Individualized Family Service Plan, for August 13th.

Last Wednesday, we met them at their office for the first time. They presented us with a typed version of their assessment, which was very fun to read. They had lots of wonderful things to say about our entire family, and were very complimentary of the way we were raising Caitlin, and about our involvement with the LPA and with Caitlin's medical care. It went through segment by segment, describing Caitlin's development in the major areas of speech, socialization, vision & hearing, gross motor skills, fine motor skills, and a few others. She actually scored at appropriate age level in every area except for gross motor skills, where she definitely had a few things that she was behind more typical development in, like crawling on hands and knees, "cruising" along furniture, and transitioning from upright to the floor without just letting go and flopping. As y'all may have seen on Facebook, she's doing a great job of pulling herself up to stand on her own, and does it on anything she can get her hands on. Because of this concern they referred us to a physical therapist/occupational therapist from California Childrens' Services. We should hopefully be hearing from them anytime now... Also, because of their concerns currently and our concerns for the future, they set us up with a speech pathologist from their program to work with Caitlin's speech development. She's had a lot to say already - that will have to be a future post!! No really, I mean it... LOL

They also suggested that we take part in at least two other services they offer - the first is a parent support group for parents of kids with special needs, where parents (like POLP and the blogging world, primarily moms! LOL) can get together and talk about their issues and experiences and help support each other. Cherylle and I have attended this together two weeks in a row, now - despite the fact that I'm the only dude in the place, it's been really great. Like attending an LPA event, it's nice to be in a place where people know what it's like to be different than others, or to have outsiders not understand or even accept your child.

The second is called the Lunch Bunch - it's a weekly chance for the speech pathologist to observe the kids with their eating behaviours. Part of what I'm saving for that separate post on speech is the correlation between speech and eating - they both involve many of the same movements in a small child, and fixing one helps fix the other! It takes place about 15 minutes after the parents' group - you bring a snack for your child, and the therapist brings something for them to try, and everybody hangs out and chats while the kids munch. It's really kinda fun, but after the first week we decided to only do that every other week for now - the more we tack on on Wednesday mornings, the more work we both miss, which just makes things more complicated...

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More on all that later - meanwhile, I have good news and bad news about Caitlin's new daycare. The good news is that despite Caitlin's pickiness, she's finally warmed up well to Ms. Josie and Ms. Lilly. In fact, when I take her there in the mornings, she actually leans out of my arms and reaches for Ms. Lilly, and doesn't look back as they walk away! Yay! It really sucked to listen to her cry when we dropped her off in the morning - she's so dramatically different than her brother, who never cared where he was as long as people paid a little bit of attention to him!

On the other hand, the bad news is that despite the fact that Ms. Josie was the one who offered to open her home to specialists for Caitlin without our ever asking for it, she's now changed her mind. Since the beginning she's been concerned about traffic in and out of the house - she doesn't even like to have kids dropped off past 10am because it disrupts the flow of things and leaves some of the kids thinking that their parents are coming to pick them up. Now, she's added concern over liability - she's talked to her insurance company, and despite the fact that the specialists all have their own liability insurance coverages, her agent has assured her that she will still be ultimately responsible for anything that happens in her home. And apparently she has reason to be concerned - when her daughter was receiving therapy, her therapist dropped her and left a mark on her forehead that you can still see now, several years later. Unfortunately, she thought of this well after we used her openness as a major deciding factor for putting Caitlin in her care - we both understand her concern, we're just frustrated that she changed her mind after offering it voluntarily!

Oh well... Cherylle's already worked out an alternative plan with Karen from the Early Start Program to meet later in the evening in our home a few times a month - we'll see how that works. Also, hopefully things will change at Josie's after we've actually been there long enough to build some actual rapport.

Till next time!!

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!