Saturday, July 25, 2015

Race Report

It seems we've become a family of runners. We've slowly increased our mileage over the last few years, as the bigger kids have been increasingly able to take on more and have been increasingly interested in doing so. The race fees haven't been easy to come by (the kids work and save up), the shoes and other gear have required rather a lot of planning (and sales at Amazon on past year's models), and the learning curve for running with offspring... Well, it's a curve, for all of us, but definitely worth it.

Almost three years ago, we tentatively stuck our toes into a 10K, because by then running a 5K in intervals was a regular thing, just for burning off steam and PE.  We'd had to take a break from running with Q because we, uh, broke his "all-terrain" chair (oops) with things like 9-10 miles per week and that attempt at the long jump, which the big brother will have to tell you more about one day. (Q couldn't have been happier about that adventure, by the way.) Amazing and kind friends sent us a WIKE Special Needs jogger stroller/bike trailer, which has been completely life-altering for many reasons. Probably the most important being that Q likes to go as fast as possible, which is much easier when we can have him on wheels, because he's still growing.

With that lovely piece of equipment, we struck out into new territory: local paths for biking, increasing gradually to 22 miles down a trail from a mountain pass, and regular rides of similar lengths. Last spring we tried out running 12Ks, and repeated them this year - one with small hills and one with two looong uphills. This year those two races were a bit harder than last because the boy grew, gaining about 8 pounds over that time period. I'd also needed some PT after wrenching my back getting him dressed, which was annoyingly debilitating (why don't we just have replacement parts, anyway?), and which meant more careful training this year than last.

We'd discussed our next plans a few times, including a local run that's a bit like Ragnar (but shorter), and the possibility of finding a 15K or similar. In January, we started running longer distances nearly every Sunday morning, supported by Grandma. Thanks to a very mild winter, we hadn't really had much downtime (no hail in our ears this year - much to Q's chagrin), so it was comparatively easy to add a half mile or a mile every couple of weeks, while maintaining a couple of shorter runs during the week (2-5mi, sometimes with stairs, sometimes with Tabata sprints, sometimes with general bodyweight circuits). In May, we shifted to longer runs on Sundays, then 3mi on Tue, 4mi on Wed, 3mi on Thu, with rest and "crosstraining" (yardwork for the win!) on the other days. By June, the Wed runs were 5mi, and the miscellaneous cross-training was back in for two days a week - some of which looked a lot like PT exercises, including stretching and foam-rolling.

In the middle of this, I opted to not run with Q when our distances were above roughly 10mi with an outdoor temp above 85 by the end of the run. Trying to keep him cool enough and hydrated can add an extra 30-60min to an already long time in the heat for the rest of us, plus we started experiencing some wear and tear issues with the Wike. This has not floated his boat, even though it has meant he instead spends time finding bullfrogs, beavers, and blackberries with Grandma and Grandpa.

The last weeks have been busy and scattered - kids with different obligations, our summer program at church, etc., preventing longer Sunday runs. After having hit the 12.15mi mark, not having those longer runs felt a little weird. We ran 8mi last Sunday, then 3 and 2 for the rest of the week, with some light circuit work. At 8 this morning, my mom dropped the girls and I off at a local middle school and we joined 171 other runners for a half marathon in the rain, over a course of various terrains.

Highlights: the racing couple arguing hilariously about when the whining should commence (now - less than a hundred feet past the start line), the mile plus of mucky trail with tree roots and a couple of waterfalls, running through the ravine where the bridge had collapsed closing that piece of trail except for race day. Also: running most of the race with my (gulp) adult daughter and kibitzing as we went, S coming in third in her age group at 2:22 (8min ahead of her goal), 55 degrees F start temp after weeks of unseasonable highs in the 90's. It was fun to follow the orange arrows off the side of a gorgeous arched bridge, into the valley by the river, through a couple of fields, up a newly chip-sealed road that squeaked under our wet shoes, and onto the shoulder of a highway where the trucks full of four-wheelers waved and gave us nearly a lane to ourselves, before we met the paved trailhead.

The race support was fantastic: water at four stations along the route, with GU and Gatorade at an additional three. The volunteers were terribly supportive and encouraging (and maybe glad that the alert County Search Rescue team were kept bored?), and the folks at the finish line positively exuberant. They had plenty of bananas, Rice Krispies treats, whole oranges, and Propel water bottles - all of which were gratefully received. Thanks to the grandparents, we have nifty photos of Q ringing the bell at the finish gate, and of our muddy feet. We are tired, but happy, and (having soaked feet in Epsom salts) might even want to do all this again... As much fun as the irregularities were, I hope the trail and bridge can be completed soon - then Q could join us on this route.

I slowed down as we were within the last couple of miles. I'd run all but maybe a mile of the course - walking parts of the slippery single-track trail and stopping briefly for GU, drinks, and portapotty. God bless the volunteers with the hand sanitizer. This meant more consecutive miles and less use of intervals than ever before, and my knees and hip were making themselves known. K had slowed too, having similar issues, so we stretched a little and she took off again, finishing a couple of minutes ahead of me. I think if I hadn't stopped, I'd have come in under three hours. My time was 3:04, which I'm more than happy with.

We're home and cleaned up (I have never loved a hot shower in quite this way), the muddy shoes are drying by the door so they can be tidied, the two very old CamelBaks are empty and ready for next time, and with everyone fed we're much less wobbly than a few hours ago. Q has even decided to make eye contact again - possibly forgiving us for not taking him along this time. The medals are shiny, the technical shirts really nice, and best of all - the proceeds have gone to trail maintenance and construction.

The air out there smelled so good today. Of wet earth, clean evergreens and ferns, fresh wild edibles, damp rocks, and a complete absence of wildfire smoke. Luscious. A blessed way to spend a rainy Saturday.

You should come next time.










P.S.   WE TOTALLY RAN A HALF MARATHON!!!   RAN!!!    A LOT OF MILES!!!!!!!!  
I wonder if there's a really inexpensive one nearby before Christmas..........

Tuesday, February 24, 2015

Will

Nothing truly stops you.  Nothing truly holds you back.  For your own will is always within your control.  Sickness may challenge your body. But are you merely your body? Lameness may impede your legs. But you are not merely your legs. Your will is bigger than your legs. Your will needn’t be affected by an incident unless you let it.
~ Epictetus

Wednesday, February 04, 2015

Reminding

    Good Timber

      by Douglas Malloch
    The tree that never had to fight
    For sun and sky and air and light,
    But stood out in the open plain
    And always got its share of rain,
    Never became a forest king
    But lived and died a scrubby thing.


    The man who never had to toil
    To gain and farm his patch of soil,
    Who never had to win his share
    Of sun and sky and light and air,
    Never became a manly man
    But lived and died as he began.


    Good timber does not grow with ease:
    The stronger wind, the stronger trees;
    The further sky, the greater length;
    The more the storm, the more the strength.
    By sun and cold, by rain and snow,
    In trees and men good timbers grow.


    Where thickest lies the forest growth,
    We find the patriarchs of both.
    And they hold counsel with the stars
    Whose broken branches show the scars
    Of many winds and much of strife.
    This is the common law of life.


Friday, January 16, 2015

Hello, 2015

As Q was having another layer of foam triangles applied to his tray today, I was thinking about how alienating equipment can be. It's such a good thing to have access to and use of so much excellent technology, and yet... As I was watching the magical OT work, it occurred to me that the rest of the world is experiencing ever-shrinking devices and ways of acheiving access. While Q's chair looks more and more like a small armored vehicle. Well, not quite, but I do wonder how much it weighs with the Accent, the support arm, the tray, and the various foam supports and/or universal mounts.

I've been saying for a few months that Q is in an amazing place of balance for meds that work but don't have wretched side-effects, for equipment that's working for him, and for growth and medical trajectories. It really is amazing: no seizure activity since starting meds, better everything for his tummy (it's kind of fun to see a truly dleighted pediatric GI doc), botox working well for those pesky upper extremity issues, and more. It's a place we've been enjoying.

After the summer's bizarre path to obtaining the Accent (a delightful combination of HIPAA violations and a frightfully persistent SLP who earned her halo), we've been working to learn new stuff - like how to incorporate Q's voice into every day, when we haven't been used to hearing such big words from him. Today, he played the ice cream cone color game with his SLP, building a cone by taking turns identifying the colors she hinted at and picking his own. He's terrifically vocal when he works with the Accent, frequently throwing a word into the mix, and it always makes my head spin for a moment, watching him transform into a kid who expects to speak and be heard. The learning curve with this is steep, and I always feel like I should be doing more - like pushing harder for the one to one I asked the District Special Services for during his school days. Have to make another phone call next week.

The girls are doing well. E wrapped fall quarter of her second year of dual enrollment with a 4.0, and works a few hours a week. K and S are swimming along through their respective school years, filling binders with writing, maps, and outlines, practicing music, and discovering new material across their subjects. All three continue with orchestra - tour in the spring, and running - 11.57 miles this week. And as of January 5, G is in the Navy. Amazing stuff, this growing up business.

Wednesday, May 21, 2014

Update

So Q had the procedures in March (lateral releases on eye muscles, botox for upper extremities, and removal of hip hardware), and they went well. I opted to skip the post-op Ativan, which seems to have been a good choice: he still woke up mad, but was distractible. The orthopedist prescribed diastat for muscle spasms, which I wish we hadn't had. Fortunately, the duration of the dosing was short enough (because I called the neuro office the next day and asked for a titration plan) that it only took us four additional days to get off of it. It was still enough time to mess up the sleep issues, and yes, per the neuro visit today, it was the diastat that did it. Dagnabit.

Going forward, we will avoid Ativan and diastat, substituting something like Flexeril if muscle spasms are a concern. In a few weeks, we'll revisit the issue of effectiveness for the sleep meds. A slight dosage increase would be fine, if needed. There've been no breakthrough seizures, so no dosage changes to those meds, for now. When he asked for updates on Q's therapies, I was reminded again why we drive so far, with traffic, and often wait a long time to see this doc: he went positively mooshy.

Q often does his power chair driving practice with a friend who is practicing driving a car that he operates with a switch pad and one thumb squeeze. The first time they were driving together, Q bumped his friend, who seemed fine with the initial bonk, but cried at the second bump. Q has since learned to approach his friend slowly (no mean feat with a head switch), getting within a couple of inches, while trying very hard to be careful so he can chase his friend again when the friend is ready to take off (his car goes faster than Q's chair, so Q has to pay attention and really work to keep up).

Since beginning to work with an AAC (speech) device, Q has shown a preference for things that are funny: games, stories, jokes, riddles. I described this to the neurologist today, mentioning that Q will go to the "HAHA" button if the audience is too slow responding to his knock knock jokes. And he'll skip straight to the punchlines if he thinks you're not paying attention. I swear the man had a tear in his eye. He said, "This is what we've hoped for, isn't it? That Q isn't just an observer or recipient of the world around him, but that he initiates social interactions, and is effective, despite being non-verbal and having motoric limitations. This is him working around things to develop cognitive opportunity."

Why, yes.

Also this week, Q sees the ophthalmologist for the two month check-up. I'm so hoping she'll say that what she did worked. "Stuck," if you will. The bleeding into the whites of his eyes looked atrocious, and I'd hate for him to have to undergo the same procedure again too quickly. Immediately following the ride home from the outpatient procedures, Q was using his eyes more completely, experiencing a greater range of motion, if you will, so he's not looking so wobbly about the head.

The botox also seems to have gone exceedingly well. The most obvious feature of this is that Q's easier to dress - all the teeny adjustments necessary as one wrangles arms into and out of sleeves are just a little more  gently made, in most directions. He can more easily isolate his index fingers, hold utensils, and hit targets. Yay!

I'm so glad this day is over. It was incredibly full of frustration, based on logistics and production issues, but the pieces came together effectively and voila! We survived, and with a little good news, to boot.

More later, lovely people.

Saturday, May 17, 2014

Progress

I hope more of this happens around the country, and quickly. I'm grateful for perceptive attendings who cut through this and other subtle biases, to institute this kind of progress. It's a small investment for medical staff, in terms of training, but has a significant impact on the outcomes for patients who will already face unusual obstacles to wellness and comfort.

Tuesday, May 13, 2014

Held

Could you take a few minutes and pray for sweet Ben and his family? And then go hug your own.

Peace be with you, friends.