For Callum

We're still here!

2011-05-25T13:44:00.003-05:00

So ... it's been more than a year. It feels like a lifetime. Callum is growing up so fast, it's hard to keep track of the changes. I suppose that's a poor excuse for being so behind on the blog, I don't know ... but here we are. Callum turned 5 in January. Anyone who knows anything about SMA Type 1 understands how meaningful that is. And he's generally been pretty healthy too - at least we haven't had any repeat PICU visits or hospital stays since the nightmare of October '08. There are still a million things to worry about, and an ever-growing list of problems to solve. But Cal is turning into such a great person, and his energy shines out more than ever, despite the physical challenges which, of course, aren't getting any easier.
This morning Janet and I went with our fantastic lawyer, Sharon Krevor-Weissbaum, to an IEP meeting with Baltimore County Public Schools. We've done what seems like a billion of these before, getting together periodically with people from the County to determine the level of services they are willing/able to provide for him, and the experience has run the gamut, feeling like trench warfare in the early days when we were the only ones who could speak for Cal's interests, to feeling more and more like the people that work with Callum, as they got to know him, have grown to genuinely care about him. Today was incredible, because this was the meeting to discuss his entrance into kindergarten in the Fall. Janet and I both got choked up more than once to be in a room with 20 people who we finally trust really are committed to doing right by him. And because this transition means that as the school year starts we'll be saying goodbye to the home-visiting crew we have come to know well - some people who have been genuinely great therapists, supporters, and friends to him. But they will do what they can to ease the transition, and it was so encouraging to meet with a new group of teachers, administrators, and medical staff who seem to really want to make school work out for him.
And, of course, we got choked up because our little boy is growing up.

Unbelievable

2010-05-20T23:53:00.004-05:00

... that almost a year has passed since our last update here. And there's no good reason for it except the seeming acceleration of the time. Days turning to weeks, weeks to months, in a blur. There's barely time or energy to focus on the present or look ahead, forget about documenting any of it.
Of course the most important thing to report is that we're all still here. Callum turned 4 in January after a Winter that was thankfully notable mostly for its weather, and he's remained quite healthy despite two back-to-back, brief but scary, brushes with illness in the Spring. The past year his development has just rocketed forward. Last Halloween was the first noticeable milestone; kitted out in his Gorilla suit, he went Trick-or-Treating around the neighborhood in his power chair and blew our minds by being incredibly outgoing and gregarious, smiling and literally shouting "Happy Halloween!" to everyone he saw. He didn't care about the candy at all either, it seemed like it was all about the festive atmosphere and being out with all the people in the streets. This was the kid who literally days before might burst into tears at the sound of boisterous laughter, or shut his eyes at the sight of an unfamiliar visitor. I don't know why Halloween was the turning point, but since then we have seen much more of the new sociable Callum and ever less of the wallflower.
His power-chair skills have grown exponentially, and now his travels comfortably include trips to the local library and supermarket in addition to our regular neighborhood rambles around the block. He's as willful and contrary as you'd expect from any 4-year-old, which occasionally makes these outings less fun for Janet and me (I know exactly how I must sound harping on at him about staying out of the middle of the road and watching out for cars because you can't assume they'll be watching out for you). Thanks to some incredible support from Janet's mum and my sister, we were recently able to buy a wheelchair-adapted mini-van, so that now we will be able to take Callum anywhere in his power chair. Obviously this is going to be a huge step forward for him. We've only had the van for a day or so, and so far we've only been to Trader Joe's, but (for us at least) it was a pretty big deal to see him go down the aisle by himself, calling "Excuse me, little boy coming through!"
This unfortunately has to be a short post because it's yet another late night and there's just no way to easily encapsulate the last 9 months, but I wanted to be sure that, if anyone is still paying attention, I didn't let another day go by without checking in here at least to say that all is OK.
We are thankful for every day we can say that.

Callum Rocks the Ramp (literally)

2009-08-05T20:05:00.004-05:00

Are these the Dog Days of Summer?
It's been a great and remarkable one. The swampy nightmare I'm used to from Summers past has only just arrived. Janet is on a much-needed holiday in Australia (she returns - none too soon - in just a few days) and so it's just been me, Callum ,and Doc here at home. The experience has given me some serious perspective on what Janet's days are like when I am working my "normal" kamikaze studio sessions.
To all my single-parent friends, when next we meet, allow me to buy you a drink.
It's also been flat-out awesome having all this time with Cal. At first I tried to pack all sorts of Neat Stuff into each day, but after a few such manic days it dawned on me that maybe slow and steady might actually win the race. So, lots of time swimming, reading, eating meals together, walking Doc through the neighborhood. We did do a Baltimore Zoo trip with Julie Goodwin and her twin daughters, which was great even though it coincided with the arrival of Summer Hell. Callum was calling for Julie's attention at every turn - a natural reaction to an excess of Menergy in the house.
Cal has been rocking out in his Zippy Z-Bop power chair. Still building his navigational skills, but his therapists all agree he's really ahead of the curve. Today was his first high-gear foray up and down the ramp. We did a quick ramp session on Monday but it was all very slow and I had to push him on the way back up. Today he was working with his PT, Tiffany, and he was ecstatic to finally be going faster. He ran smack into the rail at the end of his climb back to the top of the ramp, and the look on his face was so fascinating. I couldn't tell if he pinched his toe slightly against the rail, or if it was just the feeling of having finally really hit something with a bit of force, but I could clearly see the gears turning in his head. This is the sort of thing he needs in order to really understand that the power chair is not a toy and that his actions have real consequences. It might sound weird, but this moment really made my day. Of course, no parent wants to see his/her kid get hurt, but I guess this was like a mini-version of him getting a skinned knee, and that's such a powerful lesson for kids as they learn to get around in the world. Growth in action. It was so amazing to see him mulling it over.
His negotiating skills are developing apace, much to my chagrin. Every night at bedtime he makes many convincing arguments for why he should have a break from his bi-pap machine. In fact he's a high-powered negotiator for or against anything he feels strongly about. And when he can't quite work up a reasoned argument (or the 3&1/2 year old version thereof) he still has the energy of youth in his favor and he is a master of relentless repetition. Which is how we can end up listening to the same Buzzcocks or Translator song 16 times in the car.

5.22.09

2009-05-22T22:19:00.007-05:00

Summer, and do I dare say things are looking up?
It's been so long since the last time we updated this blog. And I always say it'll be more frequent going forward but ... maybe I am developing serious reservations about how much of our lives (as in, the lives of almost everyone we know) now happen online, or maybe there just aren't enough hours in the day. In any case, here we are at long last to share some good news, most of which has been long in coming. The big BIG deal is that Callum's power wheelchair is due to arrive - FINALLY - at the end of next week. Getting to this point has been a kind of slow-motion nightmare, in that we let our expectations get raised a bit back in October when the process began, and then when the red tape came along to snag and drag it all down, it was a bigger letdown than we were prepared for. In any event, we fought and slogged our way through it and we're told it will be here next Friday, which is such good news, especially as Callum is now asking about it a lot - there's a lot of "when I get my power chair" in the air.
The other good news is that Callum is finally going to get more physical therapy through the Baltimore County Public School system. When he turned 3, he transitioned out of the Baltimore Infants and Toddlers program (a state-sponsored program to help home-bound kids with disabilities - he had some PT, OT, and tutoring through this program, which was great). These services then became the responsibility of the Baltimore County Public School System, which uses an entirely different model (the "educational" model) to determine the level of services they will provide. Under this model the county only provides services which are pertinent to Callum's education - anything they can define as "purely medical" is not their responsibility. Which sounds reasonable when you put it in broad terms ... until you think about how literally every sort of activity has educational relevance for a 3 year-old. Anyway, initially this meant a severe cutback in the amount of physical therapy they were willing to provide. As in: they wanted to provide almost none. This brought out the fight in us, particularly in Janet, and we pushed back. A lot. And things have steadily been improving as we get to know the people involved and they get to know Callum. And the thing is, he is working with some really great people through the County, so we are very happy that he's getting more service hours, because we can see that more therapy time is actually getting really positive results for him. SMA Type 1 is not a diagnosis that engenders hope for positive outcomes from physical or any other kind of therapy. But if you just look at the diagnosis, and you miss the individual entirely, what good are you doing? And if there's one thing SMA teaches us, it's that generalizations don't work. So it's heartening to see everyone getting to know this amazing person who we are lucky to call our son, and seeing just how much good their work is doing for him.
On a lighter note, he had his first haircut back in March and it was a wild success all the way around. We were chewing the idea over for a long time, wondering when the right time would be, and whether it would be traumatic for him. But of course it was more traumatic for us than for him, and in fact the whole experience was really fun, and it seemed to unleash a more extroverted little boy.
He seems more tuned-in to music than ever before, and though his pitch is still pretty random, his rhythm seems really good. His OT, Dawn, brought a children's Casio keyboard with her this morning, and with coaching, he was able to play some tunes on it by himself. In the past we've tried and failed to find a keyboard that works for him. His hands don't seem to have enough "push" to activate the keys. But this is the first one we've seen where the extremely light touch of his fingers was actually able to engender a sound (that's why the Kaoss Pad has been so great - virtually no pressure needed - but it's mostly a funny noisemaker). Nothing beats a proper keyboard if you have an appetite to learn about music. He was STOKED.
He's been really into a song called "Struck Down," from the new Clutch record. He requests it over and over when we're in the car. To be played "very loudly." He first became attached to this song as an instrumental rough mix when I was in the middle of working on the record. Once the vocals were added and he first heard the vocal version in the car, he was affronted: "Dada! there's a man in the music!" But now he sings along with the vocal - phonetically, which is pretty crazy-sounding (sometimes like a very drunk Clutch fan, other times more like Dutch sound-artist Jaap Blonk). Hopefully it will be a long time before I have to explain the lyrics to him, particularly the exact meaning of the phrase "reefer madness."
We took Callum down to Wheaton today and it was great. Caterpillars and butterflies are high on the list for him, and Toni had clipped an article about the butterfly show that they do at Brookside Gardens, so Janet and Toni and Callum and I all drove down this morning and went to it. It's the most excited we've seen him about anything, ever. For days he's been talking about "the mariposas" and this morning he was even trying to cut short his OT session (which he usually really enjoys) so we could get on the road earlier. He was in high gear all the way down. Beautiful day, great park ... the highlight of this for me though was taking him on the really cool miniature railway they have there, which I used to go on all the time when I was a kid. I held him on my lap, so I didn't get to see his face well, but Janet said his expression was magical. It's a noisy train and he has a quiet voice, but I could hear him exclaim "this is awesome!" - which of course was worth the whole trip.

Home From the Hospital

2008-12-07T23:33:00.004-05:00

Last Thursday Callum came home from what amounted to a 5-week stay in the Johns Hopkins Pediatric ICU. Well, it was really a two-week stay to treat bacterial pneumonia, with a day or so in intermediate care, four days at home with us thinking he was out of the woods, and then a rude awakening followed by a two-and-a-half week stay back in the PICU to treat respiratory complications associated with a virus they never did quite diagnose. He's come through it amazingly well, all things considered. More assertive than ever in some ways, yet also with some new insecurities. Maybe having to sleep in the overlit PICU, and experience some time without either of us at his side has made it hard for him to re-acclimate to sleeping in the dark in his own room, because at bedtime he's more clingy than he's ever been before. But though we worried (along with a million other things) about how he might suffer from all that time without his regular physical therapy, he doesn't seem to have lost any ground physically. His hamstrings are tighter, and maybe, just maybe, his right hand has a little weaker grip than it did before. But it's hard to gauge these things.
I think this time really clobbered Janet and me more than any other time Cal's had to go to the hospital - having done this enough to have expectations (believing there might be a "typical" arc of recovery for him ended up being a big set-up), enduring a 2-week stay, thinking he was in the clear, and then having to go straight back in with things actually seeming worse. In his other hospitalizations, I don't remember ever feeling - at least not as viscerally - that he might not actually make it through. We have a lot of love and gratitude for the good people in the nursing and respiratory teams at the Hopkins PICU. One of the few joys of this experience was to see Callum get better day by day and watch his personality re-emerge and turn into a full-on charm attack.
We owe so much to Toni Holter and Heller Kreshtool - their support has been incredible through this, as Toni sat with Cal so many mornings in the hospital, enabling us to deal with the rest of our responsibilities to at least some extent, and Heller looked after our dog Doc, visited with Cal, and offered us a place (via tupperware in the end) at her Thanksgiving table. Words are inadequate for what it means to feel like someone "has our backs" at a time like this.
He's come home with some new gear in the form of a bi-pap machine he's supposed to wear overnight, and the experience has also forced us to drag out the pulse-oximeter again, also for overnights. It has a sensor which attaches to his big toe to monitor blood-oxygen level, and it alarms when the number goes below a certain level. We are trying to reset our natural anxious proclivities because this thing inevitably alarms under totally normal circumstances when he's asleep - everyone's blood-oxygen level fluctuates throughout the night. I can feel what's left of my hair going grey.
So, back-to-back respiratory infections knocked out Halloween (a major disappointment - we were gearing up for it in a big way for the first time in a long time and Cal was totally on board - he even has a gorilla costume which he never got to wear, but will hopefully work out for him next year) and Thanksgiving (never been one of my favorites anyway), but we've got our fingers crossed for Christmas.

2008-10-24T08:42:00.000-05:00

Callum's favorite songs 10.24.08 - these are the songs and records that prompt repeat requests and commands to "play it very loudly:"

Bob Marley :Buffalo Soldier
Kraftwerk: The Robots
Jason Dove: Be Free
Joe Strummer: Coma Girl
Donna and Althea: Uptown Top Ranking
Elizabeth Mitchell: all of You Are My Flower
Report Suspicious Activity: Lipstick on a Pig
Lee Perry: Blackboard Jungle Dub
K.T. Tunstall: Little Favours
Kristin Hersh & Michael Stipe: Your Ghost

Last night there was a benefit for Callum here in Baltimore at the Ottobar, organized by the amazing Gordon Withers. It was such a sweet night - Ponytail came back from CMJ to play, along with soihadto, Gordon's jawbox cello quartet, 4th Grade Security Risk, Twine, and Peter Maybarduk. Gordon put together such a fun show, the vibe was so great, and the fact that everyoe brought their energy and effort together to help Callum was really profoundly affecting. Thank you everyone, and thatnk you Ottobar for providing the venue.

2008-10-01T23:34:00.002-05:00

10.01.08
How time can go by like this has always been a mystery to me. But we have had a really good few months. I don't want to tempt fate with a statement like this, but Callum has been doing great. Whenever I've thought to sit down and write, to preserve the moment, I've opted to just go on savoring it instead.
Which is of course exactly how so much time can end up going by.
We've spent as much time as possible this summer with Callum in the water. Janet found some great flotation collars online which unfortunately tend to last only a couple of swim sessions but which are a perfect design to support him as he splashes around. The pool was a total revelation for him and he couldn't get enough of it all Summer long.At first it was all about taking him to the edge of the pool and getting him to push off like he used to do in the bathtub when he was smaller, or just making him laugh by splashing around, but just before the weather started getting too cold, he had actually started to coordinate some movement, kicking his legs and pushing the water with his arms, and moving himself along - albeit at a very slow pace - under his own steam. Swimming is probably the single best physical therapy he has had this year.
The other big recent news is that Cal test-drove his first power wheelchair at Kennedy-Krieger Institute last week. He did nearly run over both Janet and me on a couple of occasions, but by the end of the session he seemed to have a grip on the importance of stopping when "driving the robot" (robots are one of his great obsessions these days and he immediately made the connection with the power chair). We were all elated when he clicked the "go" button for the first time, realized just what he was doing, and went rolling down the hallway toward Janet.
Finding a mechanism to control the chair is probably the biggest job, since Cal's grip is so weak. Very light finger-switches were the first approach we tried and it worked, physically at least (we all ended up thinking maybe it's too linear an approach since it would require several switched to cover all the things he might need the chair to do). A joystick that seems to work more like a track-ball is next on the list for control options; maybe that will end up being more intuitive? We're excited to see. We are planning to return and try out as many chairs and configurations as we can before making a final decision on a particular power chair, since this is a piece of gear that will be with him for a long time and we want to be sure it's the right one.
We had guests from the UK last week too - Janet's old friends Kate and Dave and their daughter Belle, who is almost exactly Cal's age. It was the first time he's spent any time with a kid his age and it was great. Amazing to see them together, their interactions with each other ... in the runup to this visit we were a bit worried how Cal might react to the constant company of an able-bodied peer, but instead of making him discouraged or upset (or whatever we thought it would bring out in him), Belle's company seemed to inspire him and he cheered her on as she ran and generally threw herself around our living room in typical toddler style. They also were able to play together a bit and got pretty good at sharing Cal's toys. The two of them together brought a wonderful new energy into the house and we were all sad to see Kate, Dave, and Belle return to the UK at the end of a too-short week.
Cal has had a couple of colds this year, which he got through OK, and he had another week-long pneumonia scare earlier this Summer but after a trip to the emergency room at Hopkins we decided to treat him here at home with antibiotics and a disciplined schedule of cough-assist and other therapies, and he got though it just fine - and he was generally so "up" that it was hard to tell he was sick sometimes, except when he was finally really out of the woods and his personality was able to come through full-force again.
He is really loquacious these days and honestly I can't think of anything I'd rather do than hang out with him, play and chat. His malapropisms are pure gold (we were playing with some wooden blocks today, and when I told him that they were cubes, he informed me that they were actually "barbecubes").
If I don't stop I am in danger of writing til daybreak, so that's it for now. Hopefully it will be a matter of days and not months before another entry here.
With much love to all those who have continued to offer support of all kinds,
J, Janet and Cal

2008-05-01T23:58:00.000-05:00

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

2008-03-27T19:56:00.003-05:00

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

2008-01-29T10:01:00.000-05:00

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

2008-01-27T22:16:00.000-05:00

1.27.08

2008-01-27T00:35:00.000-05:00

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

2007-11-26T17:29:00.000-05:00

2007-11-24T20:25:00.000-05:00

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.

2007-10-28T23:33:00.000-05:00

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?"

2007-10-25T23:24:00.000-05:00

Fall is finally upon us, and with it the chill and some very English wet weather here in Baltimore. We had such a nice little temperate Indian Summer over the past few weeks. Callum is probably not going to get out of the house much from now until next Spring - at least not without some serious bundling up. I hope it will be warm enough this Sunday to take him out to see the annual Halloween Lantern Parade in Patterson Park. Got my fingers crossed, anyway. It was bloody cold for last year's parade, and I think he was too young to appreciate it anyway, but this year I think he'd get something out of it for sure.
He had a little bit of a cold this past week, which he got over with no complications (just some frayed nerves on his parents' part). We have been suctioning and using the cough assist on a much more regular basis than ever before. Cal is a trooper about it - these things are a regular part of his discourse just as they are a regular part of his life, so now he wakes and goes to sleep saying "cough-uss? suck nose? nappy change? cuddle?" Anyway today he finally seemed really clear - the past week was just not much fun, trying to keep on top of his congestion and how he was handling his food, etc etc ... he had a lot of little short scary choking/coughing episodes at mealtimes ... but all's well that ends well, right?
We took a day trip to Dewey Beach on Moday the 15th - that was Cal's first time seeing the ocean, the weather was breezy but sunny and beautiful - despite getting sand in everything it was a great little "holiday" (another favorite word in Cal's ever-expanding repertoire). Our wonderful neurotic dog Doctor Robert came along; it was his first time seeing the ocean too and it completely blew his mind, which was really fun to experience. Dewey Beach allows dogs off leash in the off-season with a permit, so he was capering up and down the sand and spazzing out the whole time, drank salt water and looked completely confused, etc. It was great comic relief for us all and also it was great to see him really enjoying something totally new.
We also visited our friends Kim and Bill down in Silver Spring; Kim took us to a park with a handicapped-access swing. Until recently we had a swing for Cal hanging from the ceiling in the front room of our house, but we took it down in preparation for our coming move, so this was his first time swinging in over a month and he was in total heaven. He kept saying "go!' over and over again, laughing non-stop. Cal also inherited a ton of great board books from their son Nick, so we have been digging into those with great enthusiasm. There's one about astronauts that he's totally into - after only the first reading, Cal was saying "astronaut," "shuttle," "space" ... I can't help thinking zero gravity would really suit him. Maisy is a huge hit with him too. Also found some new Margaret Wise Brown books that we hadn't known about: Bunny's Noisy Book, Home for a Bunny, Sheep Don't Count Sheep ... "Rabbit's Wedding" by Garth Williams ... just got to keep reading, it's awesome how much it engages him. He's also learned some songs. He's getting pretty good at "Baa-baa Black Sheep" - even though he kind of skims over a lot of the actual words, you know that's what he's singing and he initiates it a lot of the time.
He also seems to be entering the Terrible Twos, with a fair bit of vociferous whinging and near-tantrum style behavior, which is frustrating at times, but it's always worth taking a step back and being thankful that he has this kind of energy at all.

2007-10-03T13:45:00.000-05:00

Cal's new words & phrases:
cuddle, airplane, park, "milk, book, and a-sleep," "suck nose," buttered toast, marmite, "row, row, row your boat," and of course "oh bollocks!"

Cal giving Kalisha her birthday card and gift.

2007-10-02T20:40:00.000-05:00

2007-10-02T20:32:00.000-05:00

2007-09-26T08:14:00.000-05:00

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

2007-09-20T22:37:00.000-05:00

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.

2007-09-13T23:08:00.000-05:00

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.

2007-09-09T20:43:00.000-05:00

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 ...

2007-09-07T19:52:00.000-05:00

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."

2007-09-04T22:10:00.000-05:00

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.

2007-09-03T20:40:00.000-05:00

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.

2007-09-03T20:01:00.000-05:00

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

2007-06-08T19:18:00.000-05:00

The funny thing about blogging is that, unlike a diary, a blog is written for an imagined audience. So when things get heavy, you have to decide just how much you want to share with those who might read it. Which is a large part of the reason this space has seen no updates since March. Don't get me wrong - things are really good at the moment, certainly about as good as they can be within a difficult context. But the past few months have brought with them a lot of serious thought, hard work, self-examination, and open-ended questions. Sharing all that in detail just hasn't seemed like it would help us get anywhere, or indeed even wind down at the end of the day.
But here we are at last - in Mississippi again, having exhausted the few distractions we could count on during Cal's therapy days, and ready to share some of what's been going on.
We're almost halfway through our stay here, and it's great to see everyone here again and see how Callum gets back into this routine. He seems to have a little new movement in his hips, and his hands are no longer stuck in the heavy-metal devil horns position, which is pretty exciting (even though the devil horns always looked good in photos). His metal salute always perplexed me - Susan here at Futures said his extended pointer fingers reflected a really switched-on cortex - i.e. Cal was in a hyper-conscious mental state without having all the unconscious stuff in place; Chuck, Cal's O.T. in Baltimore, said it had to do with the functionality of different nerve sets governing different muscle groups in his hands. Anyway, he's using his whole hands now to some extent, and he can pick up and feed himself lightweight finger foods like shoestring potatoes or veggie crisps. He is talking almost non-stop, with some cool new words like "plum," and "butterfly." Yesterday at lunch he requested to eat pear by name. He can also repeat little musical phrases when you sing to him (he's good at fanfares) and the other day when we were singing "What Goes On" to him (we brought guitars this time), he shook a rattle along with us, more or less in time. He LOVES books more than ever,and we love reading with him. His tastes at mealtimes are really broadening too, which is fun. He ate lentil dal with spinach for the first time today.
He's also entered a new "whiny" phase, which mostly seems to reflect a need to be challenged, to do new stuff ... we are really glad it's happening, because socially/intellectually it seems exactly right for his age.
On the downside, he's developed a clearly observable scoliosis betweeen his shoulderblades, which is a spot that's hard to address with therapy or with orthopedics. We are quietly embracing all the positive stuff, always encouraging of any new thing Callum can do, yet there is also always the specter of the degnerative aspect of SMA. On one hand, it's pragmatic to think about it, but it's a waste of precious energy to wonder if and when these little milestones might be taken away. The future is just not known, and we have to look at that in a positive frame of mind.

Our trip to Seattle back in April was pretty mind-blowing. We finally got to meet Dietrich Klinghardt again after having met him for the first time a few years ago, and it was his first time meeting Cal. The weekend as a whole was exhausting. We planned our trip to coincide with Dietrich's seminar, which focused on treating autism but touched on a lot of other "incurable" neurological problems as well, and we attended almost the whole program (Friday through Sunday inclusive), which gave us a lot of food for thought. Cal was a trooper. We had to make the most of our time there, so we scheduled our first meeting with Dietrich at his practice on the night we flew in, and Cal barely slept on the plane, so by the time he and Dietrich actually met, Cal must have been awake 14 hours. His appointment lasted at least an hour and he held up amazingly well. No tears, no tantrums, just the mellow sweet Cal we know and love. There was a great feeling in the air there at the office - everyone really focused on Cal and it really felt like he was communicating with them too. A great night.
Our participation in the seminar led us on some really rich tangents, and we left with some insights we really took to heart - especially about how the emotional health of our family can have a real impact on Callum's health. It's something we have always thought about, always knew in a way, but it was worth going all the way across the country to have it brought into intense focus. We also left with a lot of homework: a number of dietary, homeopathic, and naturopathic treatment approaches that we have since put into practice.

Since we got home, Cal has been having some great sessions with his Craniosacral therapist Leyan, his home-visiting Physical Therapist Bonnie, and his new home-visiting O.T. Chuck. Bonnie, Chuck, and Leyan have all been so great with him, and it's wonderful to see him as his social awareness grows with these folks outside of our little family. We also tried to take him swimming for the first time at a real pool, with our friends Kim and Bill and their son Nick down in Silver Spring, but Cal was having none of it - it's just not time to graduate from the warm bathtub yet.

We also tried to make a thank-you list of the people and bands who have been so generous to us and Callum in the past few months with their time, energy, and art - and we had to give up on it, because we know it will be impossible to do it - despite our best intentions, someone will be left out, and for that reason alone it makes no sense. We owe you a lot. It's largely because of those efforts that we can keep this schedule at Futures Unlimited (2 weeks at a time, every 3 months), see Dr. Klinghardt face-to-face ... and feel like we have some resources to work as aggressively as possible to give Callum a chance at the best life he can have. In other words, you have given us more hope than we had before. Can a "thank you" suffice?

with much love and gratitude
J, Janet, and Cal

2007-03-19T23:09:00.000-05:00

3.20.07
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.

2007-03-09T19:47:00.000-05:00

3.9.2007
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.

Happy Birthday Callum

2007-01-29T00:50:00.000-05:00

Yesterday (1/27) was Callum's first birthday. We celebrated with a few presents (he got some awesome bath toys from friends Eve and Rob in the UK, and some handmade wooden ones from Kim & Bill & their son Nick) and by putting up his best birthday present, a swinging chair that hangs from the ceiling in the living room. He can sit in it and look out the front window and be swung - it seems to be a big hit.
We had a scare around New Year's - Cal caught a cold which as predicted, developed into an upper respiratory infection, and he spent about a week at Johns Hopkins. Janet and I alternated nights sleeping on a trundle bed by his side. It was the tensest time we've had since September. But as our friend Eamonn reminds us, Hopkins - just 5 blocks from our house - is literally one of the best hospitals in the world, and I think they proved that to us with the care they gave him. Cal's home now and recovered, so we're back to planning for his Mississippi and Seattle trips. Caution is the new watchword though - we have a much deeper understanding about the "risks" that come with a run-of-the-mill cold. I can't wait for winter to end.
A bunch of friends did benefit shows for Cal this weekend: Nick Pimentel and the Owls and Crows folks did one in DC; Jessica Hopper organized one at the Empty Bottle in Chicago with Bobby Conn, our pals in the Life and Times, and Red Eyed Legends; and our old friends at North Six in Brooklyn put on a show with Ted Leo, Medications, the Forms, and Last Letters. Cal is so lucky, and we are so lucky, to have these friends and this kind of support. I don't know how we will ever be able to thank people for the kindness they are showing. I don't see how Callum will ever grow up to be a proper cynical punk rocker, since he is already experiencing undeniable proof that at least some people are essentially good at heart.

12.2006

2007-01-20T23:46:00.000-05:00

Our son Callum Zachary Robbins was born 1/27/06, and for the first few months of his life, my wife Janet and I had no clue anything was wrong. We remarked on his “mellowness,” the fact that he didn’t seem interested in his legs or feet, and that he seemed to really hate being on his tummy, but he was really sociable and obviously bright from an early age. Even our pediatrican thought Cal was just developing in his own way. He was, and is, simply a wonderful kid. But when he had passed his 6-month appointment and still didn’t sit up or even shimmy, and started having trouble holding his head up, we got more worried and went back to our doctor, only to find that something was indeed very wrong. We were told he had a severe lack of muscle tone, a total absence of reflexes, and the official diagnosis of SMA Type 1 was confirmed by bloodwork soon after.
We are lucky to live within walking distance of Johns Hopkins, where Dr. Thomas Crawford has been a specialist on SMA for 18 years. We were referred to him and he has been Cal’s doctor since the diagnosis, and he has been great. But when someone on the cutting edge of 21st century medicine tells you there is little or nothing that can be done, it does have a harder impact than hearing it from your family doctor.
We are encouraged by his perception that at least for now Cal is in very good shape for a kid with his diagnosis. It is not uncommon for an infant with Type 1 SMA to already have severely impeded breathing and/or digestion, but Cal’s respiration and digestion seem really normal and healthy - he has a really strong voice and great appetite, and for his condition, fairly good head control. As an 11-month old with the physical aptitude of a healthy 2-month-old, in some ways maybe he is ahead of the game.
We do as much physical therapy with Cal as we can (to keep his muscles from wasting and thereby keep him as healthy as possible), and we do everything we can to keep him from getting sick, because thanks to his weakened chest muscles, his lungs will probably not develop fully, and he will be at greater risk of a simple cold turning into an opportunistic infection, and even pneumonia, which is most likely to be his downfall.
The most perverse thing about SMA is that no two cases are alike, so there is no predicting the course of Cal’s illness. SMA Type 1 is often fatal in infancy, but there’s just no telling what’s actually coming for Cal, except that actual improvements are not to be expected.
We are working overtime to explore our options outside the traditional thinking. Since October, along with conventional PT, Cal has been getting regular cranial sacral therapy; we are working with another neurologist who has used detoxification programs to treat and even cure kids with other neurological disorders, to explore what effect dietary allergies and environment may have on Cal’s condition, and we are also looking into the feasibility & safety of trying him on Valproic Acid (an antiseizure medication that may boost the body's protein production) outside of a formal clinical trial setting, as Cal’s too young for clinical trials.
Most promising: in December we took a 2-week trip to Futures Unlimited, a unique physical therapy practice in Mississippi with a very special approach to neuromuscular disorders, which gave us a lot of hope. After 2 weeks there, we saw Cal get some muscle tone where he previously had none, a contracture in his right leg straightened out, and he is definitely inhabiting his body more than before. We have a lot of faith in what we experienced there and we will make it a continuing part of Cal’s care.
We are getting some great logistical support from the MDA and MD Infants and Toddlers program. We still don’t know just how far our insurance will go for the more conventional expenses that are coming up, like wheelchairs and the associated corrective surgery, assisted breathing machinery, etc ... meanwhile the alternative stuff is 100% up to us.
Our great friends Kim Coletta and Bill Barbot took the step of setting up a donation page for Callum on the DeSoto Records website back in December, which has opened the door to an incredible surge of goodwill and support from friends and acquaintances around the world. It's given us energy and resources to move forward that we simply wouldn't have otherwise, and it's hard to find the words to express our gratitude. We both dream of a day when we can try to explain to Cal how, when he was just a baby, so many people rallied to give him a shot at a better way forward.
After the initial shock and sadness of the diagnosis, we’ve come somewhat to grips with the ever-changing "new normal." Janet and I are reveling in this time with our son. Cal is not "our stricken baby," but rather a beautiful kid, with incredible positive energy and such a strong character that often it's been like he is the one getting us through it, not vice versa. Though we know the road ahead is going to be different and sometimes a lot more difficult, Janet and I are still experiencing the joys of being the parents of a wonderful little boy.
We encourage anyone reading this to donate to any of these SMA-related charities:
SMA FOUNDATION
FAMILIES OF SMA
SMA SUPPORT
MUSCULAR DYSTROPHY ASSOCIATION
Though SMA is currently incurable and virtually untreatable, there is great promise for the development of a treatment or even cure within the next decade. Donations to any of these charities will help more than just one family, help fund this research, and will also help raise awareness that this condition is far from rare and can be tested for in pregnancy - if you know to ask about it.
To everyone who is helping in any way, even with a thought of support, we send all our gratitude and love.