Friday, August 17, 2018

Well, it's August.

Hi blogland. It's been pretty busy.

Instead of doing a massive recap from April, I'm going to update the April Chorus post. There's just too much to cover, so I'm going to start from now.


Things are going okay. School starts next week, and there's been issues related to her mobility. Mostly issues related to Elena doing work to preserve and protect her mobility. As in, extreme reluctance to do her exercises, work with me, stretch, etc. This has been true for most of this past year. And the results are what you'd expect; she's less mobile, has less endurance, and her crouch is worse.

Given the fact she does NOT want a school aide (too late, she absolutely needs one), and she desires to be more independent, we're trying again with a strict(er) workout/stretching/TherEx program. But we are starting from now, which is definitely different from last year.

There is still the chance of surgery. Her crouch is pretty bad. We will see if we can make improvements with the strengthening regimen.

She has some goals this year, besides being a good student and continuing her singing; one is making a workout app. I'll spend more time writing about this later, if it comes to fruition. Another one is to make a commitment to swimming throughout the year.


Oh boy, where do I start here? In general, her condition changes approximately every 3 weeks. It sounds impossible, but it's true! Her major seizures have been controlled with medicine since approximately the end of May/beginning of June. We switched from generic Trileptal to Oxtellar (same dosage, same drug, but Oxtellar has a slow-release formula which greatly reduced her side effects) and she takes Onfi nightly. We are now down to less than 2 seizures per month.

As the seizures went down, her "activity" went up; she slowly started, than erupted, in jerks/convulsions at the beginning of sleep (rather than the previous style of seizures, which were in deep sleep) every single time she fell asleep. Sometimes they are only 2 minutes, sometimes these bursts last for 3 hours. Sometimes she hypersalivates, sometimes she hits herself (with her hands/arms, or whacks them against things, including floors) resulting in bruising. Sometimes she wakes up, sometimes I easily wake her, and other times I spend 2 minutes trying to wake her up.

She has had five EEGs this year.

This "activity", at the last EEG (which was at the end of July) did not indicate seizures (!). They have become MUCH worse since then (peaked in Early August) and now, with the idea of practicing what I call "quiet mind" before sleeping ("pretend you're in a field of flowers, and there's a herd of beautiful unicorns, and if you're very quiet one might come up to you and you can pet it") these intense jerks have nearly disappeared.

FOR NOW. Like I mentioned, things with her have been "on the move", and everything 2-3 weeks something is new. With school starting up next week, I expect another eruption of sorts. So we're managing, I guess. My next project involves starting a food diary and making notes related to hydration/weather/activity to see if I can find any significant relationships for triggers. I am keeping my expectations low; I don't think I'm going to find any.


I am trying hard to keep things together. Jason works hard at his job, and he travels sometimes, and he's a deep sleeper. I am a light sleeper, and since Vivian is unpredictable, I've basically been on Vivian night watch. You can imagine how much uninterrupted sleep I get. We finally bought a Sami3 infrared monitor/alarm for Vivian; I'll report on that in about 2 months.

I'm trying to keep our family active and have the kids be kids; they were on the swim team, both went to camps, we went to the beach,  played in the lake/river (check out the instagram feed in the sidebar!) and we just got back from New York. I'm just a little too tired to blog right now.

School starts next week; I have a few other meetings with E's team+teachers before it starts. Vivian has her neuropsychology exam next week (basically, it's an IQ test as a baseline; we've seen some decline since starting her meds. It's not much, but Jason and I both see it, even if her new teacher will probably think she's great). Right now it's a juggle between family, appointments, school prep, and the odd treat for Jason and myself (date night, bike/jog for me).

Thursday, May 24, 2018

Today is The Day!

I'll have to do a recap later on things in the "next up" sidebar; today is the day we have been working towards ALL YEAR.

Elena is in the elite women's chorus; they put on an amazing end-of-year concert, one day only. It's called The Rock Show, and they have professional lighting, a warm-up band, one costume change, and a end of year ceremony. We went last year as spectators, to see what prep Elena would have to do if she made it this year.

Besides an intensive rehearsal schedule, Elena has other things she's been working on: how to physically prepare herself for the 45+ minute performance, posture, stability on stage (close call in during the Toronto performance, I'll write about it later), dress, navigation, etc.


I promise I will take pictures and be able to post them!

Thursday, May 3, 2018

End of 2017/Beginning of 2018 recap

It's the Avalanche of a wrap-up recap. I'll do my best.

December 2017

I spent a lot of time trying to "winterize" Elena's trike. I made a clip-in shoe by putting the screw plate in an old sneaker, and attaching a SPD cleat (this typically wouldn't work for kids b/c pedaling with this on a soft shoe, like a sneaker, would bruise the foot; b/c E wears SMOs, it's fine). I also found a trike trainer, which was gifted to us by SportCrafters--it's a roller designed for single drive cycles (like E's trike, which has a single-rear drive). We try to practice 2x/week, but with her schedule it can be tough. Elena likes to try different positions on her trike, which is great--but these don't work as well off the trainer (she can tip). My goal with the clip-ins is to try to work on her endurance (we are at 20+ minutes on the trainer) and try to have her realize where her foot should be on the pedal when she rides (often she puts her heel on the pedal instead of the ball of the foot).

Shoe, cleat with pedal attached (note angle of the cleat position)

The Mule with roller trainer

Shoes on pedals. Note that the toe is angled outward to accommodate E's anteversion.

I added pedal extenders so E's knees won't hit each each other as she pedals. I am holding a smaller size, while the larger extender is mounted on the bike (my finger is touching it).

Our big event was we went to New York for Christmas! We have been to The City several times, and feel pretty comfortable getting around--but this was the first time in cold weather. And it was cold. This means lots of layers, and navigating transportation and layers with crutches/wheelchair.

Jason managed to snag a hotel close to Central Park. This would have been perfect in the summer, as we did a lot of walking; it was so cold, we didn't go far on foot. It was icy and slick in places, and when Elena is bundled up, walking is pretty cumbersome (winter coats with the loftstrand cuffs, especially!). The issue with hailing a ride so close to Central Park, once you get in the car, you literally don't go anywhere for at least 10 minutes--which makes walking, for most folks, a lot quicker than riding. In general, we took the chair with us; there were plenty of times we didn't need it (but still, better to have it just in case!).

Central Park carriage ride

Baroque Christmas tree

We enjoyed seeing lot of decorations, lights, and shows (including The Nutcracker and our favorite, the Brandenburg Concerto). 

Macarons in Bryant Park

Modern Pinball

Overall, the trip was a success, but navigating the city is much easier when the weather is warmer.

January 2018

Normally I put together yearly goals each New Year. The short list: (Amy) visit Antelope Canyon, work on jogging and biking; (Jason) rehab to be able to run his races/marathon; (Elena) complete the neighborhood bike loop (very hilly), visit Paris (?!); (Vivian) see Spanish dancing, go snowboarding, run a business (she wants to make her own shop).

E was inducted into the Astronomy Society here, in the first group of the Future Astronomer's Club. She can find stars using her telescope, use a sun scope, and identify a few constellations. It's a great group!

January was kind of a mess, given that's when we received Vivian's epilepsy diagnosis. We still managed to go skiing (E did a great job on her 4-track skiing, and Vivian learned to snowboard!), but the weather didn't cooperate so we only had one opportunity (short winter).


We also decided late 2017 that Elena would do less physical therapy and more personal training--the idea here is she would be doing more exercise in an age-appropriate setting (our therapy center is more focused on younger kids). We set out to find a personal trainer who would be fine-tuned to Elena's needs, as well as any other appropriate group exercise settings. She was a part of a short-lived group of disabled women, which she loved (unfortunately the group fizzled...we're working on other options).

Pumpin' it up with J at The Gym

February 2018

I went on a Tanzanian Adventure. It was incredible! (That's the short version).

Lion. NBD
At the Serengeti airport waiting on a bush plane. I'm nervous.

We switched Viv's meds from Keppra (it left her practically comatose, and that was below the working dose for her age/weight) to Trileptal. Short story here is, we're still trying to find a med that works.

Viv preparing for her sleep-deprived EEG, watching movies/playing games/doing crafts. Temple (our cat) trying to comfort Viv.

March 2018

Just trying to keep up. Elena is doing relatively well keeping up her schedule: before school 3x/week, Bearettes (elite chorus), DnD club (gaming) 1x/week; after school she has PT (every other week, Mondays), Personal Training (Tuesdays), Psych (most Wednesdays), workout group (Thursdays), and Personal Training (Fridays). Weekend is bike or swim. (sounds like a lot b/c it is; E is done weekdays by 530 at the latest). For Vivian, she has baseball 2x/week (games and/or practice), goes to the climbing gym with me a few times a month, and plays with friends regularly.

Almost caught up!!

Sunday, January 21, 2018


Seizures have become an almost nightly occurrence. Hypersalivation, face frozen, choking sounds, gurgling, waking from sleep, scared. Lasting anywhere from ten seconds to almost three minutes, sometimes more than once a night. It's scary, and complicated, and I'll write more about it later. Needless to say we've all been busy around here. I know a little about seizures, given my connection to the CP community. I've even seen a few, but they weren't like these. 

And it's not what you think. It's not Elena. 

It's Vivian.

This week she was diagnosed with focal epilepsy. More tests are coming, and more information. 

Right now, we are managing okay. I've had some tough days here, a lot of sleepless nights, but today at least, I'm feeling like the bring-it-on, tough-as-nails, steeled-Mom that I know I can be. But if you know about seizure medication (she started Keppra, and we were given Diastat as emergency medication), or about seizures that have common elements to Vivian's (she is 9; no current known triggers after her first EEG; not expected to happen during the daytime) I'd love to know more about your experience if you'd like to share.

Thursday, December 7, 2017


Since Elena is mainly a crutch user, her hands are busy most of the time. This makes carrying difficult.

We've been trying to give Elena tools to be as independent as possible, but carrying is always at issue. While she is at home, and inside the house, she does not use her crutches. We expect her to do as much as possible on her own, safely. We have been practicing carrying dishes (mostly empty dishes) for a few years now; E clears her place after eating, which means bringing any dishes/cups/cutlery to the sink. She will typically try to carry things in one hand (which can mean a few trips) and steadies herself along the wall, table, or other surface as she walks (which is fine, if her hands are clean. Ahem.). In general, E hates making more than one trip to do this, but we're pretty firm about being safe with dishes and cutlery. She puts away her own clothes (can not carry the laundry basket), and carries toys and books (typically one-handed, but can use two if the distance is short).

At school, she carries her own backpack most of the day. This is touchy because her backpack is heavy (much to my dismay; we've tried lightening her load, but it is largely a losing battle with the school district. They refuse to support ultralight material since she has an aide that can carry for her if needed. I understand this, but they miss the negative social impact of E having to have a grown-up at her side as a middle schooler). If she works too hard on carrying a heavy load, she crouches more, slows down, and tires quickly. Her aide does a good job trying to balance Elena's desire to be self-sufficient with her expectation to function for the school day.

She has a standard sized backpack; we she does not generally carry her school computer to/from school as she has one for school and one for home. She does carry it from room to room, during the school day, as needed. We keep her 3-ring binder thin and regularly empty papers to keep it light. She typically has 2 copies of required books (normally for language arts; one for school and one for home). She carries a water bottle also, but only fills it halfway to keep it light. No matter what we do, it's big for her.

BACKPACK PICTURE, before school day (max weight)

Out of school, and especially on trips, we are trying out carrying options. The end goal is for Elena to be out with friends, and able to 1) answer a phonecall, 2) pay for something, 3) carry something she buys with her (in a bag, or backpack, or on a tray to a seat) and keep up with her group.

She, like many middle schoolers, wants a phone (she does not have one; this is another subject all together) but even if she DID, she has to prove she can carry it and use it. Her clothes are largely knits (they are easy to get on, and are not stiff) and almost *never* have pockets. I did find these, which are pretty awesome.

She has several sized backpacks, but if the phone rings, she can't get it out fast enough to answer it. It is also difficult for her to get into her backpack (if it's on her back) in a standing position (she prefers a place to set her crutch, possibly sit, take off her backpack and rummage through it). Purses, for the most part, are unusable b/c they end up swinging into her crutches or falling off her shoulders.

A hip pack is a great option; we have several sizes (small, large) and a few colors. Elena doesn't love the look. But it works.

Small pack. Doesn't hold much.

Large pack. Easily holds phone, easy to get in/out. Of course she doesn't like it

I've also considered a holster-type bag, where it would attach to belt loops (most of her clothes do not have these) and be secured by a strap around the thigh. But it would be potentially problematic in the bathroom (in general, belts are for E) so that idea was nixed.

I have considered adding pockets to all of her clothes (kangaroo zip pockets) but I have never sewn a pocket in my life, nor have a ever sewn in a zipper. I bought these shirts for the girls in the past. I've considered making a vest, with pockets all over, but my sketches don't look good enough so I haven't done much with it.

We have a few magnetic pockets that can are secured over the waistband of pants. Overall, it's pretty useful--but some are too thick and heavy, and others too small to hold much. My favorite is this one; lightweight, with a zipper. Again, possible issues of losing the pocket during a bathroom trip (in the past, the instruction is to take off the pocket and stick it to a metal surface in the stall before toileting). And, unfortunately, the pockets have erased hotel cards in the past (magnets!).

Large magnetic pocket. A little bulky, and uncomfortable when sitting.

I looked at bags that attached to crutches, but they are very small and don't seem to be built for quick accessibility. I also worry if she puts the crutches to the side, that money/keys could be easily stolen.

We had an OT group work with us this summer on a carrying option. It had to be accessible from the front, not get in the way of using the bathroom, be secure so things wouldn't fall out, and cute. They came up with the "Pocket Sash", which works very well. We brought it out with us (it was awesome in New York!), had her carry a few things (including money, something like a phone, and her clip-on sunglasses).

Pocket Sash!

Elena's biggest complaints about the Pocket Sash were 1) it was hot (really?) and that 2) she was upset that you couldn't see her outfit b/c the sash blocked everything on some of her favorite shirts. So while the Pocket Sash was incredibly useful, it isn't working with Elena's fashion sense on some days. I still think this is our best go-to-carrying option. I could alter it a bit, but I really think the pockets are in a great position for her.

Still working on this. Suggestions, anyone?

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!