This has been a pretty emotional week for me, and to be quite honest I'm not sure where to start.
There are three main parts to this: school, E's visit to her orthopaedic surgeon, and her last PT appointment.
Regarding the first point (school), Elena has a fabulous team of people--educators, therapists, aides, and fellow students. We have a few goals for her this year, but they were more or less informal and I had a great start with her team in the beginning of the school year. The goals (aside from her IEP) were: 1) E will keep up with the class (under her own power), 2) she will carry her own lunchbox, 3) she will navigate steps at the school herself with good speed and 4) she will maintain focus to stay with her classmates (she is very distractible in hallways and tends to lag behind). Then my husband was on an extended work trip for three weeks, and everything else disappeared off the radar. When I reconnected with the team, I got some surprising news.
I had heard previously that E was always late, which I assumed was b/c of her losing focus in the hallways between classes. Actually--that wasn't the problem at all. Elena was always late--WITHIN the classroom. She's last to the table, last to circle time, last to get up from the floor...and not only last, but actually very late. At home she gets around without issue--but she's not hard pressed for time, unless it's in the morning for the bus, and that's not a huge problem. I was floored. I figured the biggest obstacle was distance (for example, to the music cottage outside the main school)--and I was very wrong. I'm hoping this is a focus issue, something related to her not wanting to stop a given activity to make it prompty to the next INSTEAD of a giant gross motor issue in the classroom. I guess I hope that, anyway. I was pretty disappointed that we had another/different/additional problem to deal with on top of her obvious disability.
Then we met with E's doctor, a yearly scheduled visit that often gets pushed back. Honestly, this doc doesn't do all that much for us; we frequently get the "keep doing what you are doing" one-liner, and I have to press for more feedback, which I do. During his examination of E's legs, he mumbled "that's interesting" and didn't continue. I asked him to elaborate.
He said it was "shocking that Elena had so much spasticity below the knee, considering she had a rhizotomy". I didn't know how to process this--what was he talking about? And then I mentioned something about how SDR gave her the power to differentiate her right and left legs. I can't remember the details--the conversation stopped (we were at the end of our appointment anyway), and I knew I was defensive but curious and the visit was over--it's sort of a blur.
A few days later at our usual PT appointment, Theresa asked about our doctor visit and I relayed what the doc said. She immediately agreed.
WHAT? What did that even mean? And then Theresa said something that resonated--
that patients who have had SDR typically do not deal with so much tone in their lower extremities post-surgery. E is on her toes--A LOT. The impulse is strong. She can put her feet down when standing, on command, and stay there--so the problem is NOT length. It's spasticity.
The whole reason we had SDR in the first place.
I felt like someone dropped an anvil on me.
The reality is...we don't have any other options. This weight is so heavy.
I've tried to bounce back--honestly, we are NOT where we were pre-op. This is a fact. I've been thinking about this a lot, since I was asked to do a guest post of "where are you now" post-SDR, and up until last week, I was all sunshine and rainbows about it--and now I am disillusioned. Pre-op, Elena's legs, when straight, were like steel--I felt like I was literally going to break her legs when trying to put her in her braces. If she tried to move one leg in space (sitting, hands-free, or sometimes with her walker) both feet would move. She fell "like a tree" all the time. She could not side-step or back-step, etc. etc. Post-SDR, the biggest difference I have always noted was that she can differentiate (and bend) her right and left legs--making walking, dressing, stairs, and protective responses much much more feasible. I guess I didn't realize that most patients do those things with their feet flat--with a better foundation for balance. It's easy to put her feet in her braces, but with them on and in her shoes, she's still on her toes.
This "up-on-her-toes" phenomenon didn't just happen. It's been as long as I can remember, really, even post-op. She's better at putting her feet down, but it HAS to be a conscious action. I guess most other patients don't have to do that. Theresa said that she's seen E's biggest gains after her lengthening procedures. I figured that was because of the combined forces of SDR and the lengthenings, but now I'm not so sure.
I am quite upset because her spasticity is still a problem--and it isn't getting better. I don't actually know if it is getting worse, but simply having such tone can cause all sorts of issues as she grows, and aside from stretching and therapies I have no other options (save maybe phenol block?, of which I am not keen). I'm upset b/c I didn't think I had to continue to deal with this. I guess we have been all along, but now that I am conscious of it, I find it very troubling.
I do think that she can have better command of her body (feet down, better recruitment) once she learns how to move "from the center" (think dancing or yoga)--but that is such a mature concept, it will be many years before she can understand this. It's my job to try to keep her strong, stretched, and preserve her joints until she gets there--and if spasticity is bad, I don't know if I can do it.
Like I said...this weight is heavy. I feel like Sisyphus.
