Wednesday, September 26, 2007

Here is a pretty good link that goes into some depth about CCDT.

Thursday, September 20, 2007

Going home tomorrow. Callum is sound asleep in his room, Janet is asleep on the other side of this room. It's a unique headspace we get into here; though Janet and I are by now longing to return to the weird, wired (and happily agnostic) Baltimore life we know and love, we also know this is a special place and we are so thankful for our time here. It has been a real gift to have this time with our son - the past 3 weeks have brought a developmental explosion for him. Over the course of this stay, he's started saying things and interacting in ways that represent a huge leap forward. I know these developmental leaps are totally "normal" for toddlers, but I don't know how many parents are lucky enough to be able to immerse themselves in them when they happen. That alone is reason to prize this time. Yesterday morning he was a little snotty, so we did cough assist and suction on him - before cough assist now he says "ready?" with a big smile (and when he's not into it he says "no cough!"), and he totally slayed me when after suction he said "suck-a-nose." This is the tip of the iceberg. It has all come along in the past 3 weeks. He now typically greets me with "Hello Dada! How you doin'?" and when I ask him in return, more often than not he says matter-of-factly: "a-doin' good."
"Suck-a-nose" will probably become the official name of the suction machine.
Let's face it, it already has.
Physically, we are seeing a little more "oomph" in his shoulders and his back, and more muscle tone in his legs, specifically his hamstrings. Sometimes he's been arching his back when he's picked up - that's new and unexpected. It's so hard to measure Cal's progress, mobility-wise. Do we expect him to one day suddenly be able to roll over or sit up unsupported? There's no real answer for that. I often find myself wondering if it's wishful thinking that makes it seems like he's gained a little function in one area or another. But then I try to take a step back and look as objectively as I can at what's happened, and it's indisputable that he's made gains. We know what he was capable of at 5 months, and what he lost at 6 months, and the things he's done in the past 6 months that seemed impossible when he was a year old. The tiniest improvements to be sure, stuff like: being able to pull his arm up to reach out for something in front of him when he's on his tummy, or being able to shake a cat toy and make the bell inside ring. But every little bit of mobility he has is hard-won and priceless.
With this much concentrated Callum time AND a therapy schedule that honestly also gives us a little bit of a break - all too rare - that lets us really enjoy the social time we have with him even more, I feel in an ideal position to really take in all his new ways, his new skills and how he's starting to respond to the world. Plus the weather has been beautiful, and our hosts here on the farm, and the folks at Futures Unlimited, are some of the kindest people I've ever met, so there is a lot to appreciate. We've had some great time outdoors in the sun after Cal's therapy days, he's "met" the deer and goats on the farm (they come right up to the stockade fence, not shy at all), he's had some great bathtimes in the sunshine, it's been awesome. Three weeks on, though, it's definitely time to return to our regular lives - there's a nagging sense of things needing to be attended to. And it's going to be great to see our neighbors and friends, and Cal's day-to-day therapists back home, who are so supportive, all of whom we really miss. I think they're in for a treat when they work with him next.
We are making a vow to step up his home program too, since we won't be back down here again til next Spring.

Thursday, September 13, 2007

Out here on the farm at midnight, we are getting rained on by the far leading edge of the former Hurricane Humberto. I guess this Summer has been one of unprecedented drought around here, so the rain is welcome. I myself preferred the drought, but I don't have to really live with its consequences.
There has been a cancellation at Futures Unlimited for the coming week, so we've decided to stay on a few days longer and see if this round of treatment doesn't gather a little more momentum. Callum is doing great - I went in for his afternoon session the other day to try to learn some new stuff for his home program, and in doing his therapy myself, I was amazed at how much stronger he seems, especially in his shoulders and arms. Driving him home the same day, I was stunned to look in the rear-view mirror and see him actually pick up his stuffed frog toy with both hands and lift it to his face. This toy isn't huge, maybe 4 inches square - it's a fat green frog with a little digital voice box inside that goes "ribbit" when you squeeze it - but up til now he has been playing almost exclusively with cat toys, specifically those little plastic shaky balls with the bell inside. That's about the extent of what he's seemed able to lift on his own. So for him to actually lift a stuffed toy with a battery inside - even a watch battery - from his lap to his face, is just mind-blowing.
We've picked up some cool little Playmobil toys for him too, most notably a little black plastic dog which he has named Pup-pup. This is the first toy Cal has actually given a proper name. Pup-pup, and a small pink plastic cup from which Cal dispenses imaginary tea and soup, are his perennial favorites. He has been on fire these past couple of days, in a real explosion of language and social development, and we're so happy to have this time to really revel in it.

Sunday, September 09, 2007

In the words of Alan Partridge, "Sunday, bloody Sunday."
Not the ideal day to visit any small Southern downtown, but it was also Callum's day off today, so for lack of a better plan we drove a half hour West, to West Point MS, birthplace of Howlin' Wolf, to see what we could find. The answer: not much. On Sunday afternoon at least, West Point makes Columbus look positively cosmopolitan. Small town America can give off a decidedly creepy vibe, and we were feeling it today even in the sunshine ... although when I asked a few locals the way to the Howlin' Wolf memorial, people were nothing but friendly. Anyway, this photo represents the ultimate fulfillment of our quest. To the victor, the spoils!
Last night was another tense one, as we thought Cal was coming down with a cold - he was really snotty and needed to be suctioned a couple of times. We put him to sleep on his side and turned him in the middle of the night when he cried out in his sleep. But even though it was a really tough night, Cal provided a break in the tension too, by calling out "oohh - book!" in his sleep when we turned him. He is clearly obsessed.
Once we were all up for the day though, he seemed really fine, his usual self.
I am not trying to be a drama queen when I say this, but the amount of "just getting on with it" in our lives is truly extraordinary.
Tomorrow it's back to therapy. Callum has been learning new words at what seems like an exponential rate, and he's enjoying his new language skills so much that he can't stop talking in what is supposed to be an atmosphere of total quiet in the therapy room. Aidan, another toddler in the program with him this time, was crying last week and Cal told him "it's OK Aidan." He's talking about Doc, and about going to the park, a lot ... apparently Susan told him "Callum, I think you talk too much," to which he replied in kind: "you talk too much!" ... Susan has said she thinks he's definitely making improvements, and we're taking that with a cautious feeling of encouragement, especially in this context of S.M.A. where we're taught that "no decline" constitutes good news.
Some more photos ...

Friday, September 07, 2007

We LOVE Margaret Wise Brown.
Her books are so surreal it's hard not to imagine she wrote them in some kind of benevolent drug-induced haze. I first got this suspicion from a quick scan of Little Fur Family, which for its sheer sweet weirdness is probably my favorite kids' book of all time, and I'm standing by it.
Callum is definitely down with the M.W.B. He's so psyched about his books in general, whether they're new ones or the same few standbys that he can quote from memory with a little prompting. Today was the day of "BOOK!" - a non-stop litany once we picked him up from his therapy. I was reading "Goodnight Bear" to him tonight with his bedtime bottle, and he sort of spluttered for a minute as if he had aspirated a tiny bit of rice milk, so I immediately got worried and started patting his back, and asked, "are you OK?" - to which he commandingly replied "Yeah. BOOK."

Tuesday, September 04, 2007

It's late on Tuesday the 4th; the first day at Futures is always a big one, as we all adjust to Cal's new schedule. He was a champion though. He had a great appetite at lunch and was really gregarious. A big part of the Futures plan is tummy time and a program of assisted arm, leg, and trunk movements on a massage table, in a medium to reduce resistance. We have been using organic olive oil as a medium at home since it seemed to have the least effect on his sensitive skin; other media we tried gave him terrible eczema, but olive oil has seemed generally good. They are using glycerine here now and it seems even better. He was typically wiped-out at the end of his therapy day, but got a second wind when we got back to the apartment at Mill Creek and we got into a couple of books. He completes sentences when we read him his old favorites and we can all practically recite "Brown Bear Brown Bear" from memory.
We also sang a bit and he shook his rattles along. That didn't last too long though; for one thing, I just don't know enough songs, and for another, there's a good chance that his rattle-shaking is an attempt to drown me out rather than jam with his old man. In the end. music time gave over to an extended round of "hello? good-bye!" peek-a-boo.
He then gave us a huge scare at dinner by choking on some lentil soup. He often likes to throw his head to one side or the other when he's seated in his fancy high chair - we reckon he is just exploring what little mobility he has to the fullest - but often when he does this he can't bring it back very well. Next time you're eating, try throwing your head back and see what it does for your swallowing/breathing power. Then imagine you can't get yourself out of that position. So Janet had him out of the chair in seconds and over her shoulder and then over a pillow, giving him chest P.T. and then suction ... anyway it was a very scary few minutes but we all came through it OK. The whole thing was so awful and so banal at the same time - one minute you're spooning lentil soup into his mouth, normal as can be, and the next minute panic sort of breaks in a slow-motion wave over your consciousness even though almost nothing has seemed to change, he's just reacting like someone who needs to clear his throat, and it's easy to forget at times that this simple task is no easy matter for him.
In the end, I'm happy to say, the worst consequence of this episode turned out to be our shattered nerves, and that Cal was put off his lentil soup.

Monday, September 03, 2007

The day was actually pretty nice. There are a few of these awesome DIY "sinner, repent"-type billboards en route to Columbus and we're trying to make sure we leave with pictures of them this time. This one's in Gordo, AL.

Here we are again in Columbus MS ... I would say I don't know why we only ever blog from here, but it's obvious to me: this is the only place/time we get a minute to rest and reflect. Cal is sleeping in the next room, Doc is hunkered down on the bed (ours of course, not his), and we are unwinding after the 2-day drive.
Tomorrow is day one of Callum's fourth session at Futures Unlimited. We're looking forward to meeting up with everyone here again, and to Callum getting another concentrated period of Chronologically Controlled Developmental Therapy. We try to do this stuff at home as intensively and as regularly as we can, but being at home, with the demands of work, and the desire for Cal to have good experiences OTHER than therapy all day long every day, mean that this is the place where the CCDT really has a clear impact. So coming down here is always a very hopeful time for us.
Cal is chatting up a storm these days, really parroting back almost everything that he hears, and making some really cool associations. He told his O.T. Chuck "that was a big fart!" the other day (I'm pretty sure Cal was talking about his own fart in this case). Callum also has an amazing relationship with our neighbor Toni. Part of Cal's summer routine has been extended tub time on our roof deck, and Toni comes over from her roof to ours with toys and a seemingly endless supply of enthusiasm that Cal really feeds on. The communication between them is just awesome to see; Cal's face lights up when he sees her or even hears her voice.
He talks to us both almost non-stop at times, demanding our attention in no uncertain terms, and following up with a forceful flow of syllables that's often unintelligible but always full of purpose. He was like Fidel Castro in a car seat on the way down here.
His diet is the most balanced it's ever been (as far as we're concerned, since we know babies always seem to fix on whatever they actually need at a given time); all-organic, gluten-free and free of cow dairy, but very broad. Top of the menu today and every day is rice cakes with hummus, rice pasta, Amy's lentil soup, sheep yogurt, and an ever-changing hierarchy of fresh fruit ... we feel really lucky that he is so healthy for a kid with his diagnosis, and we hope his diet is playing a big part in that. It's something you can really think yourself in circles about, but we are trying not to do that.
The relationship between Callum and Doc is also deepening. "Doc" was one of the first recognizable words we heard Cal say, but now it's clear when he's calling Doc (who doesn't quite listen yet - unless Callum is holding food), or when he's trying to tell us something about Doc that he thinks we really need to know. Callum used to eat toast at breakfast, but now demands "toast!" for the sole purpose of feeding it to Doc.
OK that has to be all for now - we are going to try to write a little bit every day while we are here so ... best intentions for more tomorrow.
J, J, C