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


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


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


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.

Thursday, March 13, 2014

Resources and recommendations

First, have you seen my Amazon Widget over there? To the right... Yup. Orders placed via a click on one of the words in the product cloud add up for us. I've started planning for next school year, and the funds from orders are welcome. Thanks, friends.

I keep recommending Neurology Now to folks I run into, for all kinds of reasons. Mostly because we all possess brains, nerves, as well as the myriad blessings and confounding messiness those things entail. The articles are good for general information and the archives present an awful lot of information on just about any neurological issue one can name.

My friend's delightful art.

Another friend's fantastical structures. Which are also delightful art.

Apples and Pears and Dancing Bears, for kids struggling with reading (especially dyslexia and related issues). Sound Foundations is a UK company, with US orders processed here.

Tuesday, March 04, 2014

End the Word Day

March 5 is this day: Spread the Word to End the Word.  Here's a good piece by a great dad.


Thursday, February 27, 2014

Winter into Spring

I'm taking a few minutes to break from planning during violin lessons to mess with blog settings and Amazon links. They seem to be working, which means I'm already collecting a little bit towards next year's school materials. This is very exciting. Feel free to use the links below and to the right, and to share like crazy.

The weather has been generous the last couple of days. Sunny, highs in the low 50's, and the garden is responding accordingly. Tulips noses have  been out of the dirt for a few weeks now, and have just shot up. The Sarcococa is still smelly as can be - it saves February from feeling like  an irretrievably dismal month, garden-wise. There are baby cresses still ready for us, and a collection of gorgeous red lettuces in a raised bed. K trimmed back the Munstead lavendars while I snipped dead stuff off the bleeding hearts and freed their new burgundy shoots from the already budding vinca. The sweet woodruff is fluffing up again, and the bronze fennel is throwing feathery copper shoots. Snow is in the forecast for the weekend. Heh.

The girls have decided to put some of their Christmas money toward a 10K in April, this time with Q. So we're training a little differently, because that first 10K a year and a half ago was tough, and that was without pushing the giant boy. Last week we hit 5 miles in intervals, this week we should hit 5.5. It's kind of nifty to be out in the weather this time of year. Aside from the explicit, distracting meanness in a pounding, sunny, 22 degree wind, there's been something rewarding in each of the varying runs over the last couple of months. We pushed a tree off the trail after a couple of big wind storms went through. There are little green shoots in the swampy areas, and ducks appearing on the river again. We've discovered that the girls easily outrun me in the early parts of any given run, while I (usually) end the run at a faster pace than they're running. Except for S, who is faster than all of us, almost all of the time.

The packing of Q for cold weather runs has had it's own learning curve. He wears thermals under a layer of fleece, fleece mittens, hot towels or Hot Feet (the sticky version of Hot Hands), and a fleecy hat and maybe scarf. Tucked around him then is a fleece blanket, a down throw (stolen from a sister) when it's below 30, his fleece-lined black windproof stadium blanket, and then his velcro-ed vinyl enclosure to keep the breeze down even further. It's always interesting trying to keep his face dry (drool) and warm, and unchapped. Olive oil, Eucerin, Traumeel, and Aquaphor have all been helpful with that over the course of winters. We tuck an extra towel into the back of the Wike, too, in case we need to switch out on longer runs. I feel like we've sort of got a handle on this now - which means something is about to change, no doubt.

I guess that's us in a nutshell. Q will have some procedures toward the end of March, combining needs for anesthesia to his advantage. More about that and music and school later.

Hoping you can see some cherry blossoms where you are. If not, find some cherry ice cream or something instead. Here, I'll make some ganache to go with it. We'll share.