Callum Rocks the Ramp (literally)

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

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

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.

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.

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

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.