Last week Janet and Callum and I went to DC for Fight SMA’s annual conference, “The Good Fight.” We’ve been in touch with Fight SMA’s head honcho Martha Slay for a while now (as it turns out Steve Cummings, original drummer of the Dismemberment Plan, used to work for Fight SMA, and he put us in touch with them when he first heard about Callum’s diagnosis), but this is the first time we’ve actually made the trek down to DC for the conference, and it was great. It began Wednesday morning with an update of recent research, from a panel of SMA experts from around the country, and from there went into a more open discussion of how people are handling the disease in their daily lives. All this was worthwhile of course, but above all it was amazing to be surrounded by people whose lives had all been changed by SMA, families and individuals for whom no explanations were necessary. It was a really deep feeling of community, and the whole experience brought a lot of emotion to the surface for both Janet and me.
It was great to meet Martha and her husband Joe face-to-face, as they and their teenage son Andrew have been a real source of inspiration to us as we come to grips with this disease and its implications for all our lives.
But the biggest catalyst for this trip was that Fight SMA had arranged meetings on Thursday on Capitol Hill to drum up support for the SMA Treatment Acceleration Act. This is legislation that, if it passed, would triple government funding for ongoing SMA research – some of which has had very exciting results – to move into actual human clinical trials. It would also enable better organization, smoother cash flow, and better data sharing between all the many camps engaged in this research. Because SMA can be traced to a mutation in a single gene, N.I.H. recently singled this disease out of 600 neurological disorders as the neuromuscular disease closest to effective treatment, and this bill would extend their efforts to fast-track and expand research that has already yielded very promising results in the lab. Some even suggest that if NIH had the funding they’re looking for, an effective treatment or even a cure could be attainable within the next 5 years (when Janet and I heard this at the conference, we were dumbfounded, since only a year ago our specialist told us “there will be a cure for SMA within my lifetime, but it’s not likely within Callum’s lifetime.”).
So the three of us, along with a few other Marylanders affected by SMA, actually went to see our elected representatives. We met with staff in Barbara Mikulski’s office and Ben Cardin’s office, to try to get them to co-sponsor the Act. It was crazy – Janet and I both flip-flopped between an inspired feeling of “democracy in action” and a sort of Kafkaesque numbness, but we had what we think were really good meetings, and we felt we stated our case about as eloquently as we could. It was certainly the first time I’ve dared to hope aloud that there might be a cure for this in time for Callum to reap the benefit. It was weird to be choking back tears in the Hart Senate Office Building.

There is a sort of expiration date for this Act, in that once the election rolls around in November, so much will change in Washington (rotation and replacement of committee members, calls for various kinds of “reform,” the priority changes that inevitably come with a change of guard) that the SMA Treatment Acceleration Act will likely be pulled back into the legislative undertow and it may take years before we are this close to getting it passed again. So before November, we want to encourage anyone who cares to take action. In the hope that anyone reading this blog is willing to spend a few minutes and some postage, Fight SMA has provided the raw materials and info for writing letters to your elected representatives:

– A form letter (to customize as you see fit) expressing support for the SMA Treatment Acceleration Act, and urging your representative to support it and hopefully co-sponsor it.

– The full text of the SMA Treatment Acceleration Act.

– Your representatives in the House and the Senate, and how to contact them.

Any expression of support for this Act is worthwhile: emails, calls, letters. But the main goal is to get Senators and Congresspeople to actively co-sponsor it, because the more of them that do (as opposed to just stating their support for it), the more likely it is to actually get through.

Thanks and love
J, Janet and Cal

3.27.08

In the time since our last blog, we've settled in to our new house, and we've found more and more reasons to be happy we moved to Baltimore County. For one thing, now that it's Spring, Cal loves having a back yard. But we are also finding the services in Baltimore County to be great - not only has Cal had regular home visits from a PT and an OT (and now even a teacher!), but the Baltimore County Public Schools Infants and Toddlers program sent a team from their Assistive Technology department, who found switches he can actually operate with the very limited strength in his hands, and provided a laptop (!) with simple games, animations and books on it, so that for the first time he can actually experience cause and effect firsthand. He is VERY into it - the delight on his face when he can press a button and effect a reaction is amazing. For the first time he can turn the "pages" of a book by himself. For the first couple of weeks he called it "my imputer." One day, not long after he learned to call it by its proper name, he was playing a game (press the left button to make a butterfly move from left to right, them press the right button when you get it all the way across and a song will play) and he said to me "dada, computer is ... like a room," an insight from him that completely blew me away.
We are also pretty sure Callum has an imaginary friend, named "Doop-doops." Sometimes Callum speaks as Doop-doops (for example when we are feeding him something he doesn't want to eat at the moment: "Doop-doops NOT like fruit"). More often, he speaks to Doop-doops, sharing an insight on a developing situation, or issuing a warning ("be careful Doop-doops!").
Right now we are back in Mississippi, at what couldn't be a more ideal time of year. The weather is fantastic here after a chilly first couple of days, and we've been out in it as much as possible. Callum loves to be outside and asks to go out at every opportunity. There is a porch swing here at the farm and he's been loving it - swinging with him on my lap doesn't really work, he's just too tall (38" at last measure) and there's no good way to support his head, so most times he lays supine and we swing him back and forth and he looks at the sky, the trees, the mural on the side of the barn, anywhere and everywhere, and literally shouts with joy. His imagination is also in overdrive, so he also issues warnings, laughing all the while: "look out dada! a monster! look, look, in the forest! looks like a ... elephant!" and so on.
We are so happy to be back here at Mill Creek; Marjorie and Coleman welcomed us back and it really feels like a kind of homecoming. They were kind enough to let us into the farm enclosure on Monday afternoon so Cal could see some goats and deer up close, which I think really captivated him because now every day when we pick him up from therapy, he says it's time to go see some goats.
In the months before this trip, thanks to a bunch of factors - from our big move out to the suburbs, to an increased work schedule - I wasn't able to keep up the home program of CCDT nearly as much as I should have. It was interesting to me that Leyan, the cranio-sacral therapist who sees Cal pretty much weekly, noticed a difference in him even though she didn't know he wasn't getting the CCDT as regularly as before. Not a decline, just a change in his flexibility and physicality. So I am extra-glad to be back here and I feel like even in four days of CCDT there is a difference, he seems to have greater vitality and is way more expressive, particularly with his arms. And there is definitely more to this than my guilty conscience trying to assuage itself in overdrive. There is always a little push and pull in my mind about the CCDT; I know it's the best exercise he can get, the most effective way for him to develop muscle tone, because I've seen the benefits. But I can't quite allow myself to imagine that it will reverse the effects of SMA (of course nobody is claiming that it will, but we refuse to rule out hoping for that either). It's a little nuts when you let yourself think too much about it.
Unfortunately, his favorite therapist, Kalisha, has moved on from Futures Unlimited, but though we were initially disappointed, he's still getting great therapy and he's perfectly comfortable with Caroline, the new therapist there (he pronounces her name "Caro-lawan," which makes us smile since "lawan" is Callum-speak for "lion"). He is happy to see Rose again and he even asked Susan Snapp for a "zerbert" (her family term for what we would call a belly-fart or raspberry).
He is so communicative these days, so verbal. His repertoire of songs is ever-growing, as is his vocabulary and library of quotes ... he's rediscovered the Very Hungry Caterpillar and he can almost recite it from memory. The downside of his new expressiveness is that he's very clear about his displeasure when we leave him for the therapy, and he's very clear about what he'd rather be doing, but after the first couple of days he's settled in again just fine. There is a 1-way window in the therapy room and a baby monitor out front, so we can watch and listen without him realizing we're there, and the difference in his behavior when he knows we're there vs when he thinks we're gone is striking - when he knows we're there, he can be so dramatic and insistent, and when he thinks we're gone, he chills out pretty quick and just starts talking and singing. That's been true since we first came here, but now he's much more eloquent about it all, and when he's unhappy, it's harder to take it in stride. We have to wait in the reception area til we hear him turn chatty and chilled out, and then we can go and let the Futures folks get on with the therapy.
We've been putting him to bed together every day - something that doesn't get to happen often enough at home. Whichever one of us reads his bedtime books, Janet will always lead a final sing-along of "Hush Little Baby." He is really outgrowing my lap but even though Janet is shorter, somehow Cal always seems to fit just right on hers. It must just be a Mom thing.
Having this intense family time, especially this focused Callum time, is a real gift. He just blows us away every day.

1.29.08

Thank you to everyone who got in touch to wish Cal a happy birthday.
We are so proud of our little boy. Anyone who has read anything about Type 1 SMA will know why his second birthday was so important. I think it's better not to go on about it here. Janet and I have been thinking and talking about it a lot over the past week. I think we both did a good job not letting our emotions carry us away into a headspace that would have actually taken something away from Callum's special day.
It's Tuesday morning and the house is still festooned with birthday balloons. Callum's library has grown by a third. Right now Callum is downstairs with Annette, his Infants and Toddlers PT, to whom he's finally acclimatized. She's getting him to do his best T. Rex roars and he seems to be having a blast.
His party turned out great, even though he had a total meltdown right out of the gate and had to retire to his room to get a grip. I told him, "everybody is here to wish you happy birthday," to which he replied "everybody ALL DONE," and cried his eyes out. He kept insisting to go outside even though it was freezing cold and eventually I wrapped him up and took him out for a couple of minutes. Once we were out there, he looked in the window, smiled a huge smile and said, "look at the party!" and when we were back inside, he came around and had a great time. Big credit is due to Nick Barbot for drawing him out in the way that only another kid could have. Kim brought a gluten-free, cow-dairy free, soy-free birthday cake that was actually quite tasty, and Janet and I made spinach pastries. Toni and John came up from Butcher's HIll, and Kim & Bill brought Kim's mom Suzanne along, who had never yet met Callum. And in an unexpected turn, Wino showed up with a card. Besides Callum blowing out the two candles on his cake virtually by himself, I think the highlight of the morning was Bill and Nick staging a Bionicle battle for Callum's benefit - he was totally enthralled and he kept cracking up and saying "that's silly!"

happy birthday callum

1.27.08

It's been January 27th for about a half-hour. I am exhausted after a long work day, so this is a short one. Callum doesn't officially turn 2 until later this morning, but I think, given how long it's been since we put anything up here, it's a good time to at least say happy birthday. Tomorrow morning we're having a little party (very small: Kim & Bill & Nick, Toni & John, Leyan and her family would have come but they are all getting over colds ... ). Balloons and a LOT of presents for the birthday boy.
No point in getting too deep into it right now, but Cal turning 2 ... it's a pretty big deal.
He's doing great - some issues with his skin (he's got a bit of eczema around his eyes, which has to irritate the living daylights out of him - and drives us crazy too since we are trying just about everything to combat it, with only limited success) but mostly he is healthy and happy. Voracious reader, as always. We also see him getting frustrated more often, which is heartbreaking. But it's not the whole story, and he is just as good at getting out of a bad mood, getting excited and engaged, as ever.
His most quotable quote right now is "don't worry dada, I'll help you!"
As I write, I realize how much there is to take note of - all the new stuff he's doing, saying, all the things we are doing together.
More tomorrow - time to sleep now. Tomorrow is a big day.

Callum & Granny

We moved out of Butcher's Hill last week and out here to our new home in the suburbs. Totally exahusting; still recovering more than a week later. I hope we never have to move again. The move was absolutely necessary since Cal is due for a wheelchair within the next year or so, and our old house is the narrowest, most vertical, least wheelchair-accessible place I have ever seen - and could never be made workable from that standpoint. I'm not sure a wheelchair would even fit through the front door. So Janet got down to some very serious searching and found this place, which couldn't be more different from our first house and which will be PERFECT for Callum going forward (and, we hope, into his adulthood). Wide doorways, lots of light, a big first floor that's mostly open-plan, in a neighborhood without hills and lots of stuff within walking/rolling distance. When our final (and biggest) move day was done, and I brought Cal home from his extended visit with Toni and John, he provided the perfect good omen; I asked "Cal, do you know where you are?" and he replied with a huge grin: "my new house!" He is adjusting so well, it's almost unreal. Janet's mom is here visiting so maybe her presence is helping to ease the transition for him; hard to say, just nice that it hasn't seemed in the least traumatic.
The two biggest downsides of the move are that Toni will no longer be able to just pop next door for a visit, and that we are losing Bonnie, Cal's PT from the Baltimore City Infants and Toddlers Program. We will keep in touch with Bonnie for sure but it's hard to imagine a new PT filling her shoes as Callum's regularly scheduled therapist. We are also still searching for a park here that will be as inspiring as Patterson Park was when we lived downtown ... but everything in its time I guess.

Well, despite our best intentions on Saturday night, Callum's schedule and the Lantern Parade couldn't be made to fit with each other. We headed out for it at 8PM - about an hour past Cal's bedtime - but in true Baltimore fashion the Parade started later than advertised and with Cal fading fast, we couldn't tough it out. He did get to see a fantastic giant almost-full moon in the clear October night sky, which I know made an impression because this morning at breakfast he said "look, there - moon!"
I realize this was our first foray with him into a big crowd too, and that made us a little uneasy - every time someone walking past would cough or sniffle, we'd kind of swerve Cal to the side and wait for them to pass - but I was really proud of Janet and myself for keeping a level head overall and not letting our worries get the best of us. The nice weather is back, though a bit colder, so we've got a few more park visits in us yet. The last 2 days since the weather lifted, Cal and I have been down at the duck pond in the afternoons. I throw breadcrumbs and Cal has taken to saying "come and get it, ducks!" and "go ducks go," which, for me, beats the Lantern Parade anyway. He is so into the Duck Pond that this evening when we visited with our friends Peter and Gillian, as we got to their door I told him we were about to see some friends and he replied quizzically, "ducks?"