Monday, September 26, 2016

I will not worry about his future I will not worry about his future I will not...crap


I had my list of observations and questions to run by the orthopedist during our visit last week, starting with: "He's tripping more often."

Max has taken a number of spills in recent months. Although his arms lack the reflexes to shoot out and cushion his fall, he somehow tends to fall to the side and in slow motion so he hasn't really hurt himself. Still, I've been concerned that he will.

Max did not want me to bring up the falls to the doctor. He tends to put an "Everything's great!" spin on life, which is generally a good thing but also means that he doesn't want to talk about stuff that goes wrong. I told him we had to discuss it, especially because firefighters can't fall when they are on the job.

Max breezed right into the hospital where the doctor's office is. "Wrong name!" he informed the receptionist who checked us in; her computer listed "Max" and not "Fireman Max." He requested that she change it. When we got to the waiting area, I asked the nurse if she could call Max into the exam room as "Fireman Max." I no longer feel sheepish about making these requests; I say them with a totally straight face.

Soon enough, Fireman Max was called in. The doctor took off his foot braces, felt his feet and had him walk around. Dr. T. noted that Max's right foot, the one that turns in, looked the same as it had four months ago. That was good enough news; I wasn't expecting it to get better. The spasticity is what it is. He recommended that Max sleep with his right foot brace on at night.

Max's back was straight, the doctor said, also a win. "If he doesn't have spine curvature now, is that a pretty good indication he won't get scoliosis?" I asked. The doctor said yes. A happy dance ensued in my head.

Then we talked about the tripping. "Max might need tendon surgery at some point," the doctor said, and my heart sank. I know that was a possibility for him. People with cerebral palsy sometimes require tendon lengthening or cuts to alleviate tightness.

"In your experience, do children with Max's level of CP typically require surgery or not?" I asked.

"Every child is different," he answered, just as I knew he would. He noted that we wouldn't know for a while. He said that Max would have to be off his feet for four to six weeks after having the surgery.

WHOOOOOOOOSH. That was my brain fast-forwarding to the future. What if Max's foot got worse? What if he did need the surgery? Would it be painful? How would we keep him off his feet for four to six weeks, or out of school? Would it ultimately help?

Max brought me back to reality, because he was attempting to log into the doctor's computer—no doubt, to make sure his name was in the system as Fireman Max.

"Max, you can't use the doctor's computer," I said as he pressed the alt and F10 key to reboot it (impressive).

As we drove home, I thought about whether or not Max's right foot would keep turning in more and the potential for surgery. As I lay in bed at night, I pondered it.

You'd think that after all these years, I would know better than to ruminate over what I can't control. And to some extent, I have improved. I was steeped in worries about Max's future when he was a baby, to the point where I'd read and reread the same chapters in What To Expect: The First Year hoping that I would find one thing—just one little thing—that he was doing on time. The obssessive worrying has abated as the years have passed. Yet at times, I can't help myself: I peer into the future and worry about what could be.

The very next day, we had our annual appointment with Max's wonderful neurologist. After we'd updated him on Max's progress, I asked for a better understanding of where Max was cognitively.

Dr. C. went through a series of questions: Could Max understand dates and schedules? Yes. If we took Max somewhere—like a museum—and focused on, say, a painting, would Max stay tuned in or would he start talking about fire trucks? He'd stay tuned in—and at some point, also ask if there was a nearby fire station. And would Max remember the next day what we'd told him about the painting? Yes. Did Max care what other people thought of him? Well, to some extent—he wants to look good lately, although he doesn't seem to get the niceties of social interactions (we told him about Max's tendency to point out baldness).

And then, the doctor asked a big question: Did Max have a good data bank of knowledge?

And I couldn't wholeheartedly say yes. Max does talk about a growing number of different topics. But even with his beloved fire trucks, he doesn't know that much about their parts, inner workings or history. I've gotten him books packed with details about fire trucks, he just hasn't taken an interest.

The doctor talked about bolstering Max's working memory. We could start with his favorite fire station and talk about the name of the street it's on, the year it was built, find out how many firefighters work there, etc.

"The more you build up his memory," Dr. C pointed out, "the more active his mind will be as he gets older."

Then I asked my big question: Based on patients he'd treated who were similar to Max, what kind of job might Max have when he gets older?

(See: Sometimes I just can't help myself.)

The doctor gave me a kind look. "I'm not going to answer that," he said. "Because we don't know where Max will be cognitively as an adult, he still has so much potential."

And that was the truth. And yet another reminder to stop looking for answers where there are none.

12 comments:

  1. When my son needed bone graft surgery (cleft lip/palate) I teamed up with the school. He would require 6 to 8 weeks of no contact so I knew summer was not an option. The folks at his program do so much as it is, I didn't feel it was appropriate to ask them to have to be extra vigilant and not letting him participate in many of the activities (swimming!). But at school it only required that he stay out of PE. Yes, it did require some shuffling of para's to make it successful.

    So if Max is still in school if/when surgery is needed and a wheelchair will count as "off his feet" - see about teaming up with school.

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    1. Thank you, Janet, for that wisdom. I am glad you had a good experience with your son's surgery!

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  2. Needing surgery is never a good sign. Memory is good for a lot of things.

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    1. Agreed, Anna. Having a good memory is an invaluable asset.

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  3. I know Andi's daughter Sarah Kate over at Bringing the Sunshine has some sort of tendon surgery, so maybe she could be a resource. Worrying shows you care

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    1. Thank you, Kathryn. I know Andi through the blogosphere, and hadn't known Sarah Kate had surgery. I will be reading about it now, though.

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  4. AHH! I love your neurologist's focus on Max's potential, because he's right - he's got tons of it. I don't think enough doctors are focusing on neuroplasticity. More and more research is showing that the brain has the amazing capacity to rewire itself and form new pathways to compensate for damage, especially early in life, but actually throughout the entire lifespan. Even so, Max's (teenage) brain is more amenable to rewiring than an adult brain, so I love that Dr. C. is urging you to take advantage of this period in his life in order to maximize his potential.

    I remember you mentioning somewhere that Max has a knack for spatial awareness and directions. (I've got CP too, but I can't find my way out of my own bedroom without a GPS, so I'm envious of this ability!) I'm wondering if you could use this strength as a launching point for encouraging cognitive development/new neural connections. Maybe even when you're driving home or on a walk and you're a street away from your house, you could say, "Fireman Max, help us find our way home! Do we take a left or a right to get to our house?" Or, if this isn't something you do already, maybe you could make a habit of pointing out familiar landmarks to increase his spatial awareness even further. I love the idea of using his favorite fire station to encourage working memory as well!

    I can so relate to the surgery worries as well, by the way. I've also got spastic CP (I think my lower body is more affected than Max's) and I had a tendon lengthening when I was a toddler but at this point in my life, my doctor is also talking about additional surgeries/other spasticity-reducing interventions in the future, especially for my right (more affected) leg...and it IS worrying. Hugs. I think the unknown is one of the hardest things to deal with.

    Thanks for sharing. :) I love seeing Max's progress!

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    1. K, I hope other interventions preclude the need for surgery. Thank you for jumping in here, and for making such asn excellent point. Max and I do have discussions about directions when we drive and I often test him ("Do we turn left or right here?") but I could certainly take advantage of his directional talents in other aspects of his life—I'm going to pick the neuro's brain on that. I actually have Karen Pape's new book and plan on running an excerpt soon—she is one of the biggest spokespeople out there about neuroplasticity. And she addresses the teen brain and the progress that can still be made. K, I started reading your blog tonight (but I'm crashing in a few and will return). You are an amazing writer.

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  5. Hi
    I too have found myself worrying about how things will be for my daughter and have to remind myself to slow down, I recently watched a video about a young man Andrew Short who lives with CP and his trainer Lee who are applying the concept of nueroplasticity to overcome his disability and with great results, as it was believed as we get older the brain was less flexible. Definetly worth a watch. x

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    1. Sharon, I've heard of him. Just looked and might have found the video you saw (https://www.youtube.com/watch?v=0G4GMaxHuUQ). Truly gives me hope.

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  6. I have these same fears for my daughter, and she's only two right now. The unknown is so scary, and stresses me out so much! We have a pending surgery for her legs right now that she may or may not need, similar to Max's foot, and all the outcomes have been replaying again, and again, and again. Here's to hoping our brains turn off at some point for rest ;)

    Paige
    http://thehappyflammily.com

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  7. Just thought I would add that I have had a heel cord release at the same time as some bone work was done on one of my feet. I have a different condition from CP but I imagine the surgery is similar regardless of indication. This surgery was probably the most successful one I have had and would have been less risky if I had agreed to it when I was younger (they debated about it for years, dropped it when I refused more surgeries, then I decided at 16 that I needed a working foot!). Surgery is never a good thing but I was out of the hospital in less than 24 hours and the recovery process was a bit rough as I had to be so careful but less painful than other surgeries after the first week. The doctors did a nerve block during the surgery so I was able to go through the post op period with only a small dosage of mild pain killers. The surgery is doable and can really improve functionality.

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Thanks for sharing!



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