Wednesday, November 29, 2017

The Mule

On October 21st, we traveled to JMU for the official trike hand-off. If you're new to this story, I recommend checking out these two posts.

It was a beautiful, warm October day. Engineering student Kristin had spent the summer tweaking, painting, building, and finishing Elena's new trike with the features we had picked from the spring. We were all so excited! Students, professors, and administrators came (some with their families) for Elena's inaugural ride.

You can imagine how emotional I was--Elena walked up to it, all smiles.

Love at first sight

She climbed right on, it fit her, and she literally just took off!

Finishing the first loop!

Kristen dubbed the trike "The Mule", because Viv and I put our stuff in the rear basket--having Elena carry our stuff for a change.  In addition to the basket, The Mule features the following: low step through (for easy mounting), single rear drive train (right rear), custom trike adapter (smaller, lighter than commercially available), dual front and rear brakes (operated by one lever, left hand), slightly large pedals (to help her stay on a little better), forward pedal design (a more comfortable ride/better leg utility for her), 3 gear shift (trigger shifter, operated by right forefinger and thumb), water bottle holder (in rear basket; she can easily get it when stopped), bike bell (left hand). Also included but not shown is a larger front fork; this frame can accommodate 24"wheels (these are 20") in either a bike or trike orientation. The trike fits in the van (this was a requirement) when the front wheel is turned sideways. It weighs approximately 40 lbs (35?) and I can put it in the rear of the van (with some difficulty; without a crossbar (low step through), there isn't much to hold when maneuvering).

So that was October.

We have been riding every week since then (check us out on Instagram--the feed is in the sidebar). We started on a paved path near our house by the river. It's easy and pretty--and now no problem for Elena.

I can't keep up on foot with these two

We've tried the gravel trail; large gravel isn't Elena's favorite. We've also discovered the Virginia Rail Trails system--our favorite so far has been High Bridge!

It was WINDY!

Elena's max distance right now is about 4 flat miles. When she tires, her feet fall off the pedals (she typically puts her heel on the pedal, and when fatigued, they fall off easily). So I've been thinking about ways to help her keep her feet in place.


Riding by the beach

I have 2 main ideas, one for outdoor (involves magnets, still waiting on some parts) and for indoor (clip in pedals). I wanted an indoor trike option during the winter. That's almost figured out--wait until the next post!

Monday, November 13, 2017

Surgery Next Year?

I really want to write about something else, but this topic permeates everything we do on a daily basis around here. So, here's the short version.

After a slew of new doctor's appointments, we are struggling with a surgical decision. Elena suffers from crouch--many pictures posted don't show it, and I haven't posted many videos lately (we've been pretty busy with appointments...I feel like that's all I do these days). Anyone familiar with E's type of CP knows what I'm talking about. We've been dancing around the surgery question for three years now, trying to buy time.

Why? I guess to see if it's worth the risk. To see if she can get strong enough to "not need it" (is that a thing? In the long run, I mean?). To wait until she is more emotionally mature to deal with the aftermath (big one here). To see how she develops, to possibly have more choices in terms of procedures. To hope that technology provides a new option. All of these and more.

They want to do a femoral derotation osteotomy on her right leg, and hamstring lengthenings (traditional-style, not subcuteaneous) on both legs. The surgeon said that recovery is 4-6 weeks (for WHAT? That sounds ridiculously short), so I am assuming it would be 2-3 months of pain/rehab/slow recovery until we can get her moving regularly with a walker or crutches.

Has anyone out there done this? Do you know if my timeline assumptions are close?

My biggest issues with this are that our trusted PTs don't want this surgery (typically they stress PT, exercise, not surgery) and the surgeons aren't involved with the rehabilitation process so they can't prepare us. I've heard lots of bad stories about this procedure--my kid never walked right again, rehab took forever, they had complications (infections, etc.)--but I haven't heard any positive stories. They must be out there, or this procedure wouldn't be so commonplace. I did find one, an upbeat teen, but this story was long ago, and I couldn't tell if she had CP or not.

Here is our current plan. (ADD NUMBERS HERE FROM Dr's Report regarding crouch) Elena had a bad crouch/pain/kneecap fractures in the fourth grade. Once her pain subsided, we followed a rigorous Therapy Exercise (TherEx) program to regain strength, in the hope of halting her crouch. Not only did we keep her from getting worse, her posture actually got better--which was WAY beyond my expectations. She always regresses in the fall, and we continue this plan. This year is different, though, and her crouch is worse.

Elena is an almost-teenager and is highly resistant to me as her advisor and coach. This means more appointments, more therapists, more trainers (read: time consuming and expensive) when she already complains of having too much on her schedule. Her main PT has cut back on her sessions, b/c she said if we can't get our exercises done at home, going to PT alone isn't enough (she's absolutely right) so we're going to PT less often, and substituting in any exercise that she will do. It's a change that hopefully will get her fitness up, and add some enjoyment.

Our current schedule is
Monday, PT (every other week); Tuesday free (if nice, bike ride); Wednesday swim (private instruction); Thursday Personal Training (gym); Friday free; weekend includes swimming (family time--we do laps and then free play) and biking (I am also working on an indoor trainer for her trike). I have put out a want-ad for a TherEx facilitator to come to our home (hopefully 1-2x/week).  I've taken out Psych services (now, I'm going to try to bridge the gap. We're not ready to "graduate").

It's six months until our ONLY window for surgery (if she has to have it during the school year, she won't be able to perform well in school or stay in her chorus group; summer is our best option). The plan is to hit TherEx/Exercise/Strength hard, and re-evaluate in 6 months. Maybe we could punt another year; I'm not convinced just putting it off is the best plan, either. But this is where we are.

If you have comments, I'd love to read them. Pass this along to anyone you know that might have some insight. Thank you!