Monday, March 19, 2007

Home again, face to face with regular life - 2 weeks of untouched bills and correspondence, Baltimore chill in the air ... but glad to be back. But we are going back to MS in June, it's just too good for Cal not to make it a regular thing. If you ever told me I'd spend this much time in Mississippi, I'm sure I wouldn't have believed it. I was pleased to learn this time around that Lynyrd Skynyrd's bass player lives in Columbus. It made me feel a little more at home somehow.
We finally turned Callum's car seat around, so it's a lot easier to connect with him in the car and he sees more of what we see when we're driving ... We are starting to tackle some of Cal's mealtime issues - he's a very picky eater and he definitely enjoys having control over what he will and won't eat - especially since he can't actually feed himself. He loves rice cake with extra garlicky hummous, which is fine but hardly the cornerstone of a healthy toddler's diet. So this week we are inaugurating Family Mealtimes, where we all sit around the table together and eat the same food (we are following the guidance of Janet's favorite book " Child of Mine") - it seems like a really positive step even though we still had to resort to a couple of old-school hits at dinner (goat's milk yoghurt and pureed pears) when he wouldn't go for grilled tilapia. The arrival of Cal's special chair, "the Wombat," just before we left for MS was a definite step in the right direction. The chair is awesome, totally adjustable in every dimension and it really holds him upright, supports his back and head, and stops him from losing balance (though sometimes he does pitch forward very much on purpose, which is simultaneously disconcerting and encouraging, just depends how you choose to look at it) ... anyway the chair makes for much easier mealtimes so we are cautiously optimistic for smooth sailing as we try to expand Cal's diet. The last thing he needs is to have food issues on top of everything else.
Hit book: "Brown Bear Brown Bear" by Eric Carle, which, coming from Cal, sounds a bit more like "bra bra bra bra." He requests it regularly. Hit TV: the Wonder Pets. The Elizabeth Mitchell records are still in heavy rotation, although our impromptu sung versions are starting to give the recorded versions a run for their money. Today in an inspired moment we actually sang the text of "Brown Bear Brown Bear" to the tune of "Freight Train Freight Train ..." it must have been great because Callum wouldn't let us stop singing it, awarding us his highest accolade, a matter-of-fact "again," over and over.
Next up is our Seattle trip at the end of the month, where Cal will get to meet Dr. Dietrich Klinghardt, the man whose advice led us to Futures Unlimited, and the one specialist whose perspective has allowed for actual optimism about the future.
Finally: I can't talk about the new chair, or the trips to Mississippi and Seattle, without once again thanking everyone who has helped us make these things happen through benefit efforts and personal donations. We could not have done these things - certainly not so effectively and immediately - without your help.

Friday, March 09, 2007

We are here in Columbus MS, almost halfway through Callum's second session at Futures Unlimited. It's funny how natural it feels to come back and how quickly we settled into being here, after experiencing a bit of culture shock the first time around. The South is really different from the East Coast, it would be stupid to deny it. We are trying to turn these intensive physical therapy trips into a kind of regular family vacation ... and no, Northeastern Mississippi wouldn't probably be our first choice for a vacation spot, no matter how much I might love soul food. But it feels oddly like a homecoming this time. It's especially rewarding to see the Futures people again and for them to see Callum - they are seeing Callum's progress in such a different light. I have been trying to do the Futures program at home with him as much as possible, and it seems at times like it's really helping - he has been doing a bit more with his arms and trunk, for one thing, he moves around a lot in the tub at bath time ... but we see these developments in a day-in-day-out way and they don't always seem that dramatic, so bringing him back here where they worked so closely with him and then didn't see him for 3 months, the little changes are much more encouraging seen through their eyes. He really is doing more with his arms and trunk than he was three months ago. He's still far behind the curve physically, but the changes have happened. Of course we are constantly working to avoid any kind of false hope that this is part of a larger meaningful improvement ... while also holding onto a kernel of hope that it might be. Emotionally the whole thing is a pretty insane tightrope-walk and the best way to make it all work is just to be in the moment with Callum as best we can. SMA experts will say there is no such thing as an improvement in function for someone with Callum's diagnosis, but truthful SMA experts will also admit how little there is in the way of indisputable knowledge about the progress of this disease. Though we are trying to keep ahead of the game, how many different future scenarios can you plan for at once? And there is more than enough in the present to keep us busy.
I was sick when we drove down here and I wore a surgical face mask half the time ... I was so glad when the illness passed and Cal hadn't gotten sick too.
Cal really loves Kalisha (he calls her Lisha), the therapist who has worked most closely with him, and she clearly loves him too. One thing we really appreciate about the people here (and some at home, like his cranio-sacral therapist Leyan) is that we really feel they are working with Callum the person rather than seeing "Callum the patient" through the lens of a difficult diagnosis.

We are spending a lot of our free time time reading. I (J) have been thinking about trying to read the Koran, but instead of diving in, I'm putting a toe in the water by reading "Islam for Dummies" first. I know this choice is in part a perverse reaction to the VERY Christian scene around us ... Callum, meanwhile, really loves his books - his attention span for them is incredible and we have found some great new ones since our arrival : " Bear Snores On," " Kitten's First Full Moon" ... Columbus MS is filled with outlet stores and "fell off the truck" type bargain shops - deals aplenty.
We've also brought with us two Elizabeth Mitchell CDs: " You Are My Little Bird," & " You Are My Flower". Cal LOVES to hear them with us singing along, and we've also been singing "little bird" to him pretty much any time it comes into either of our heads. He listens so intently. The weather here has been beautiful so far, sunny and 75, which is a far cry from Baltimore's extended winter, so we've been outside every day after Callum's sessions, sitting in the sun, eating fruit. It's so nice to not have to bundle him up for a change. His propensity for repeating the last thing you say to him is really entertaining ... although he is also hung up on his two favorite new words: "pear," and "pepper," both of which he says with Janet's English accent. "Pepper" covers a lot of ground in conversation.