We're still here!

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

... 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)

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