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!

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!

Thursday, October 5, 2017

7th grade: observations and obstacles

Prepare yourselves for a long post! Honestly, I'm not sure how to organize goes.

Elena started seventh grade this year. Fall is always a difficult time; there's the end-of-the-summer blues, the excitement of a new school year, the change in schedule, and the constant issue of time management--those issues are typical. On top of this, Elena has a slew of others: worsening crouch (happens every fall), time crunch, increased responsibilities (see time crunch), struggling independence (wants it, but has issues carrying, keeping up, etc.). I am trying to navigate technical resources (online school curriculum, social media for tweens, assistive technology), and give the right assistance when needed, teach her to be responsible, and give Elena the fun time she wants and deserves. It's challenging, to put it mildly.

Social/Fun time/Time Management
I let all Elena's educators know that social interaction was going to be a huge focus this year. I want her to enjoy her school, extra-curricular activities, and spending time with her classmates. Unfortunately, as a parent, it can be difficult to know what is available for kids around school groups--they are typically not posted online, or sent home as paper flyers. Normally they are advertised on school grounds or during the school announcements--this means I have to depend on Elena to not only pay attention, but also relay the message to me on time about what she is interested in doing. Sounds easy, but it never happened last year, in part, b/c of her leaving early to get to her next class or for school dismissal. We stressed at home for E to pay attention this year to what was being offered. She did, and wanted to do everything--a girl after my own heart. So we had to make a few choices.

Elena was in the Honor Choir last year and loved it. This year, she auditioned again for the elite choir (Honor Choir is a different group)--and she made the cut. They practice 3x/week before school, as well as performances out of school. It's a huge commitment, and has other difficulties (standing for long periods, dress uniform), but the director and I are in good communication and we're making it work. She has to keep up her grades and conduct in order to stay in the elite choir.

She also wanted to join two other groups--a gaming group (Tuesdays before school) and the radio/announcement (audio/visual) group. We asked her to pick one, and she chose the gaming group.

After school she has PT 1x/week, and she has Psych services about once every two weeks. We are looking to phase out psych, but honestly, I'm not sure if we are ready for that. We are still expected to do stretches every night, and the best way to help with her crouch is her TherEx regimen (takes about 20min/day), and we are failing miserably at fitting these in, and she's also supposed to be working on being more helpful around the house (but honestly there is no time for her to help with dinner, or learn to do her own laundry, etc.).

So. How to fit all this in with homework--that's the question, right?

She typically has a math worksheet daily (she was placed in an Advanced Math class this year, and it's tough for her), and two long-term projects (one for Language Arts and one for Science) that require planning and daily reading or writing. It's crucial that Elena not wait until the last minute; she cannot "hurry up" and she reaches an hour of the evening (earlier than her peers, I imagine) where she is no longer productive. She also has up to 9 online math modules to finish per week. She *has* to shower in the evenings, as her morning extracurriculars require her to rise early.

It sounds like a lot. It can be, but honestly, I think it's manageable if you work at a typical speed--which Elena does not. I help by having Elena report everything due for the week (typically assigned on a Monday) and put it on two calendars--one for the month, and one for the week. Her math is hard for her, so she gets a lot of supervision/instruction from us. She does well with her LA and Science homework. She does not triage homework well (executive function alert!) and I can't help her unless she tells me all of her expected assignments--and several slip through the cracks. She has a homework notebook to write down assignments, and only uses it part of the time. Not every teacher posts assignments online, so I must rely on Elena to tell me what is due.

Personal responsibility is key here. Her teachers know of Elena's work pace, and understand that we are doing what we can 1) without trying to make her miserable and 2) giving her some fun time (not much in the evenings, I confess) and I have no problem asking for extra time. Elena occasionally self-sabotages evenings (meltdowns concerning homework, wasting time--executive function again), resulting in a miserable night for everyone here (hence the psych services, which is also helping with executive function).

Assistive Technology/School Help
In order to try to help E increase her efficiency, I've asked her AT team to give us some tools and teach both Elena and myself how to use them. Her online math modules were extremely frustrating for her, in part b/c the type is hard to read (especially with a visual processing issue) so they taught her a shortcut for a magnifier that doesn't impede the use of the program. I think that really helps (when she uses it). The other one that we are using right now is Snap and Read, which creates an outline and references while doing online work. E is starting to use it (she needs to be in the right browser, and of course her digital material uses different ones) and I think it will serve her well.

Elena uses homeroom time to work on homework or to finish classwork that required extra time. (All kids use homeroom time for stuff like this, or reading). I have her pulled 2x/week to work with her math teacher, and 1x/week to work with her LA teacher (E approves this). There is also available math tutoring on most Thursdays before school--Elena has taken advantage of this already.

Elena is very small for a middle schooler. She can carry her backpack, but in the morning, the pack is at its heaviest; water bottle (for chorus; only part-full), lunch, notebooks; her school computer is only carried in the beginning of the day (it's left at school; we have one for home use, one for school use). She wants to carry her things, b/c that's what other students do. She wants to be independent. BUT when the pack is heavy (and since she's only ~60 lbs, it's heavy for her) it saps her energy as the day continues (as does spasticity). Maintaining energy is a constant struggle--I can tell after a long day, with a heavy backpack, and a strenuous gym class--she looks terrible when I pick her up at the end of the day. (I drive her to and from school to save us about an hour a day of travel time). To save her energy, I ask her aide to carry her backpack--or sometimes, a student (getting to early morning chorus). I know E would rather do it on her own; she knows when she is out of energy, and sometimes it's a bad scene (bad crouch, falls). I don't know how to give her the independence she craves without making everything "ultralite" in her backpack--which will lose ruggedness, cost more, and be unsupported technologically by the school district. And that's just the backpack; carrying other future things (cell phone, keys, money, sunglasses, etc.) that should be accessible is another story. We've been working on Pockets for a while. That's for another post.
Elena and I have talked a lot about independence and school, and in general, she is ultimately in charge with the expectation of being safe and as capable as possible. This translates as help carrying in the morning/when backpack is heavy, and Elena carrying when it is light/end of the day. If she insists on doing it herself, everyone is to let her; the school team understands that ultimately it is E's decision.

Any advice out there, blogland? I'd love time management tips, carrying ideas (that's the next post!), ideas for streamlining homework, etc. If I could keep time in a bottle I'd be a bajillionaire!

Wednesday, October 4, 2017

End of Summer Wrap-Up

Time has flown by again. So here's the recap (I have a lot to write about since school started!).

Solar Eclipse
We all enjoyed the solar eclipse from our front porch. The kids had friends over, and they kept darting in and out, watching through our shields/solar glasses. My family loves astronomy, so this was a special treat!


First day of school! 

Vivian: 3rd Grade
Elena: 7th Grade

The beginning of school is always a rough transition...the girls felt like they were ready for school (they were) but not ready for the summer to end (we were pretty busy, in the best way--but maybe not enough lazy time?). More on that later.

We were lucky to spend a spur-of-the-moment kayaking day with our friends the N family! I snagged a spot for myself and the girls (Jason was out of town) on tandem kayaks (Viv went with TN). It was PERFECT. The weather was great, the kayak outfitters were so kind and helpful, there was transportation to/from the boat launch, and everyone had their fair share of paddling, swimming, wildlife watching, ropeswinging, getting stuck on rocks, and riding "rapids". Seriously it was perfect. We cannot wait to go again (the kids are begging to kayak again)--but there hasn't been enough rain.

Viv swam to our boat for a picture

Sherando Lake
The following day we joined our friends the S-R family during their annual camping weekend. It rained most of that weekend, so we declined camping (hence the kayaking) but managed to spend the nicest day of the weekend out there. The girls were excited to play with friends, especially in the (COLD) lake.

Makeshift rowboat is much harder than paddling a kayak

We also met a very nice gentleman, Bill, volunteering at the campgrounds, who helped our girls fish.
After everyone caught a fish, we finally headed home.

As we were getting in the van on our way to school, I found this little guy in the grass right before the lawn mowers came through! We named him (her?) Clyde.

Box Turtle hatchling!

We've never seen a box turtle so tiny! We released him close to where we found him--but without the threat of giant cutting machines. Good luck buddy!