Another diagnosis

Pachygyria. Lissencephaly. Microcephaly. Polymicrogyria. Failure To Thrive. Hypotonia. So many words have been thrown at us and diagnoses received in the last year. And today something new was added to the list. Spastic quadriplegic cerebral palsy.

it has some sort of finality to it. cerebral palsy. the term had been thrown around by various doctors over the past year and, frankly, i had decided about a month ago to start using it myself, when the inevitable questions would start. “why isn’t he walking yet?” “what’s wrong with him?” I’d decided to just say “He has cerebral palsy.” It’s a blanket term for a range of disabilities, much as “autism” has a broad a range or spectrum as well. And it’s something people kind of know about. It’s not “pachygyria.” It doesn’t really require explaining.

And though I’d tried it out in public a few times over the past couple of weeks (after first agreeing with Quentin that we both felt okay with that) it still gave me a jolt today when we received this latest assessment and diagnosis from a lovely physiatrist we saw today, Dr. Kim. She was wonderful, both to Stellan and to us, and we are really delighted to have added her to our team of doctors and therapists. She brought up all sorts of options that I kept expecting neurologists to suggest, only to realize today that my expectations were really beyond their area of expertise. They know when something’s wrong with a brain, but not necessarily how to treat the rest of the bodily issues that result from it.

So imagine my joy today when, after reading about such therapies, Dr. Kim mentioned hippotherapy (horseback riding therapy, for when Stellan is 3 or 4 years old), aquatherapy (which I had started researching but felt I was hitting a wall), increased physical, occupational, and speech therapy (which we had discussed at our last family meeting with Stellan’s therapists), and botox injections (which I’d also read a great deal about) for helping relax Stellan’s stiff muscles.

We now have an additional action plan, which starts with further assessment, meaning we’ll see Dr. Kim again in 3 months. In January, if we all feel like it’s the right thing to do, Stellan may receive his first round of Botox injections, designed to help relax the muscles in his hamstrings and possibly his upper arms. And more therapy therapy therapy. It felt like another one of those breakthrough appointments, and Quentin and I left the hospital this morning feeling like we are getting somewhere again, even if it also served to remind us of just how far behind Stellan is developmentally.

But at the back of my mind all day, nagging me, are those words. Cerebral Palsy. It sounds so heavy. So official and final. I can’t really describe the feeling. My heart is heavy and I can feel the tears heating up my eyes, threatening to drop. So I try to focus on the positive as usual. It should mean that Stellan will be eligible for a great deal more therapy through Early Intervention, even though a lot of these things – like the aquatherapy – are generally not included in EI and usually not covered by insurance. But we’ll find a way to make it all work because, as Quentin said today, “Stellan comes first” and we’ll do just about anything we can to help our little star.

Comments

Maite
Reply

little by little he will get where he supposed to be
Stellan is a fighter and his parents are champions

Maite (part of the Stellan fan’s club)

Shane
Reply

xoxo much love to all of you.

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