It’s been a long time since I’ve written anything here. Partly, I haven’t had the time or energy, but mostly it just didn’t feel appropriate to write about a family crisis on my music/work/vanity website. This is the place where I indulge inconsequential musings about music or politics, throw down Top Ten lists and propound my love of whomever I am lucky to be working with at any given time ... but things have definitely changed around here and especially since Kim and Bill put up their page for our son Cal, I figure it’s time I said something about what’s been happening.
Above all, I want to say THANK YOU - though words barely seem adequate - to Kim, Bill, Margaret Morgan and friends in the UK, and to everyone who has donated anything or even just sent a message of support. Janet and I feel more than ever that we are part of a real community, irrespective of geography but sharing a powerful bond through music and common ideals, and for that we are truly thankful. We have been moved to tears by the kindness of friends, and of total strangers, responding to Cal’s plight. And we are thankful for the messages we've received from other parents of kids with SMA.
I also wanted to give some more specific details about what we’ve been going through.
Callum was born Jan 27, 2006, and for the first few months of his life, we 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, an early babbler, 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 pediatric 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, confirmed by bloodwork, came fairly quickly thereafter.
We are lucky to live within walking distance of Johns Hopkins hospital, where Dr. Thomas Crawford has been studying SMA almost exclusively for 18 years. We were referred to him and he has been Cal’s doctor (along with our regular pediatrician) 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 Dr. Crawford’s 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 almost-11-month old with the physical aptitude of a healthy 2-or-3-month-old, in some ways maybe he is ahead of the game.
But our brief from the world of conventional medicine is simply to do as much physical therapy with him as we can (not because it will make for functional gains, but rather to keep his muscles from wasting and thereby keep him as healthy as possible), and do everything we can to keep him from getting sick, because thanks to his weakened chest muscles, his lungs will probably not develop fully, he will be at greater risk of a simple cold turning into something more serious, and an opportunistic infection is most likely to be his downfall.
As Dr. Crawford said to us, the most perverse thing about SMA is that no two cases are alike, so there is no predicting the course of Cal’s illness. It could be stable for the rest of his life, or it could worsen - slowly, or quickly, to what degree, all pretty much unknowns. SMA Type 1 is so often a fatal condition, 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, Cal has been getting regular physical therapy, along with cranial sacral therapy which has done a lot to alleviate the physical effects of being immobile, and we have even gone outside the US (and the influence of the FDA) for one inconclusive) form of treatment.
We are working with another neurologist who has used detoxification programs to treat and even cure autistic children, to explore the possibility that dietary allergies and environmental factors may have an effect on Cal’s condition.
At 11 months, Cal is too young to be an active participant in clinical trials, and we are not generally the greatest fans of pharmaceuticals, but we are also looking into some drug-based treatments that we may be able to try outside of a formal clinical trial setting.Most promising: two days ago we returned from a 2-week trip to a unique physical therapy practice in Mississippi with a very special approach to neuromuscular disorders, which gave us a lot of hope for a way forward. After 2 weeks there, we have seen Cal get some muscle tone where he previously had none, a contracture in his right leg has straightened out, he is definitely inhabiting his body more than before, and he has even made progress toward rolling over for the first time since before the onset of SMA. We have a lot of faith in what we experienced in Mississippi and the donations from Kim & Bill’s page will enable us to return there and make it a continuing part of Cal’s care.
We are getting some great advice and logistical support from the Muscular Dystrophy Association and Maryland Infants and Toddlers program, but we still don’t know just how far our insurance will go for the more conventional expenses that are coming up, things like adaptive equipment (including wheelchairs and the associated corrective surgery) and assisted breathing machinery ... meanwhile the alternative stuff is 100% up to us, so for Kim and Bill, and Janet’s family and friends in the UK, to reach out to people on our behalf, and for people to have responded as they have, is nothing less than a blessing and it’s hard to find the language adequate to express the depth of our gratitude.
I do want to conclude by saying that, after the initial shock and sadness, having come somewhat to grips with the state of things (the “new normal”), day-to-day life right now is not always all that dramatic. I now realize how often, when we deal with disabled people, even despite our best intentions, we see the disability more than the person, and just how awful that really is. Day-to-day, with things stable as they are right now, Janet and I are reveling in this time with our son, and when we look at him, we don't see "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. He has started talking for real, babbling a lot but also saying some specific words and being even more communicative and funny ... the point being, 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, and it’s amazing.
To everyone who is helping in any way, even with a thought of support, we send all our gratitude and love.
J., Janet & Cal
Monday, December 18, 2006
Update from J. Robbins
J. posted a message on his website over the weekend following up on last week's news release: