Friday, December 7, 2018

Neuropsychology Evaluation: Vivian and Elena

In September, Vivian had a neuropsychological evaluation. Basically, Jason and I had seen some unexpected changes in Vivian since her epilepsy diagnosis in January.

The differences were slight, except for the obvious change in energy/tiredness. She stopped reading long novels, and wasn't working on independent projects like she used to--projects that could last over a few days. Sometimes they were construction projects, sometimes painting, sometimes stories. They just seemed to vanish.

We weren't sure if it was a lull, or a real change, or if it was or was not related to epilepsy. I found out her condition qualified her for a visit to the neuropsychologist.

Vivian was evaluated over the course of two days. The eval consisted of a few questionnaires for me on her behalf, and a series of IQ/problem solving tasks. In short, Vivian is very intelligent, a good problem solver, highly motivated and enjoys being challenged. What was surprising was sometimes she misses "the big picture" type of question. While we'll never know whether or not this was always how Vivian was, or was going to be, Jason and I believe our observations of Vivian (types of books, projects, etc.) are different than they used to be. We've also seen her reading comprehension scores slide, even though she's on the higher level of scores related to her peers.

The neuropsych eval strongly hinted that this has been seen in epileptic patients. Normally this is not a side effect of medication, and was my suspicion, but rather a function of seizure effect/brain damage. Vivian's MRI shows no abnormalities. The evaluation gave us strategies to help Vivian as she grows older with things like reading comprehension, should we need them. In essence, this is a "baseline" for us, in case Vivian starts behaving differently or starts having trouble in school.

I'm glad Vivian was evaluated. I was disappointed that this was never recommended for Elena, so I asked the doctor about it. We had a good, long talk; basically, I noticed that when filling out the questionnaires for Vivian, I would have essentially recorded the opposite for Elena (self-sufficiency, social behavior, responsibilities, etc.).

She told me that currently, if a baby is born and determined to have a brain injury (as Elena was), their record is immediately flagged for a neuropsychology evaluation during her elementary school years. This can help a child who struggles with independence, personal responsibility, executive function, and social interaction--basically, all fields Elena (and many other kids) require assistance/help. It can provide strategies for her, and our family, to help achieve goals, manage expectations, and improve self-sufficiency. I wish I had known about this sooner.

I had Elena evaluated in November.

Our main question for the neuropsychologist was regarding our expectations for Elena, and if they were reasonable. They are not outrageous. She is intelligent, even though she struggles with some concepts, and is verbally talented. There is more to her stubbornness and lack of progress (in self-care) than just "being a teenager". It's a mix of "other', teenage angst, learned helplessness, and unwillingness to change (she is happy how things are, doesn't want to do more for herself--other people doing things for her suits her just fine, etc.).

The biggest message we got from the evaluation was that Elena is exhausted. Mentally and physically--the day exhausts her. She feels overwhelmed. By everything. She does not get excited about learning something new, it does not motivate her to do more with it--it just exhausts her. (She is not depressed.)

I thought that was how someone feels if the subject matter isn't interesting to them. I get that; if you don't like what's being taught at school or at home, it's a drag. To me, this would indicate nothing at school interests her--which I know isn't the case. And even though it's exhausting to her, she is doing much less than your average teenager--she has to be able to handle more, if she's ever to be a functional adult. Or functional teenager, for that matter.

The psychologist and I were a bit at odds, mostly b/c she was talking about how to encourage Elena through constant praise, very Kazdin-method type of lifestyle. I am convinced this doesn't work on a smart teenager--she can see right through shallow praise, and it backfires on us.

So, in short, we've been trying to encourage good behavior and try to be more patient. It basically just gave us more responsibilities than ever, and didn't help our home life much.

But, we eventually had a breakthrough. And that's where we are now.

Friday, November 30, 2018

6 month recap: Summer to now, school edition

To put it mildly, Elena has been struggling; with/because of her, the family has been struggling too.

The summer recap, in a few sentences: swim team was good, Elena and Vivian (!) both participated. Elena got a legal breaststroke this year! Vivian went to some fun camps, and Elena went to sleep-away camp at a small community college. (We sent her because she did not want to make progress on being self-sufficient; this came to a disastrous head during a chorus field trip to Toronto April 2017.)  She ended up having a great time--we figured she would, but it was a rough transition. We went to the beach (you can see some cute pictures in the Instagram feed in the sidebar). We went to NYC, and had a lot of fun. We had a lot of Vivian stuff going on--she has had 5 EEGs this year and tons of appointments. She has some "jerks"--not seizures, according to EEG, but situations were she is not conscious and sometimes hurts herself, only when she is *just* asleep or *just* awake. Jerks including falling off beds, resulting in hitting herself, or hitting her head (again--caught on EEG and NOT seizures). I was in protection mode when she was asleep, so I wasn't getting much rest. We bought a SAMi camera for night monitoring (it is a motion activated monitor that you can customize to record video footage because of sound or movement). Best Purchase Ever. She is doing well right now; for whatever reason, the "jerks" have stopped, and we are weaning her off one medicine while preparing to increase her Oxtellar medicine (because she's grown some).

School started--Vivian in 4th grade, Elena in 8th. Vivian still struggles with staying awake some days, but in general she is doing well. Elena had a rough start to 8th grade, to put it mildly.

Elena does not have an aide this year. This is a huge change, and she's very happy about it. I was adamant about the weight of her backpack this year, since she won't have anyone to help carry. That took some convincing (no aide, no extra weight, end of discussion) but it's going well. I am happy that E can handle herself on her own now--she is still very small, but can advocate for herself (needs to leave early/late to avoid a packed hallway, change for gym class, etc.). What I didn't realize, but suspected, were other things the aide did in terms of Elena's supposed-to-be-personal responsibilities. As in, keeping track of Elena's assignments, making sure her homework was organized and turned in, planning assignments for the week, reminding her to clean up, finding her a place to sit (be included) at lunch/assemblies/etc., reporting to me her feelings regarding school work, inclusion, relationships with peers and teachers. I get nearly no feedback from Elena or her teachers regarding her school day--maybe that's normal, but this year it is an abrupt change. She seemed happy without the constant presence of an adult, but has zero experience with being an independently responsible middle-schooler, and it shows.

Another issue was her math class. Elena took a "bridge" course over the summer to see if she was ready for Algebra; her 7th grade teacher (who we love) acknowledged that she thought Elena would have difficulty but she was capable. The bridge teacher thought the same and E was placed in Algebra this year. Because of scheduling restraints with her other advanced classes, Algebra was her last class of the day. I knew this would be a problem, b/c E frequently needs extra time to finish tests and quizzes (per her IEP) and she is worn out, mentally and physically, by the end of the day. Her education team insisted we try the schedule and see if we could make it work.

Elena tanked Algebra. It didn't help that her teacher was new to the school, new to teaching the subject, frequently unavailable for discussion with me, and very rigid regarding how she wanted information on a page and how she wanted tests and quizzes completed--regardless of what was in Elena's IEP. Elena would tell me horrible things that would happen every day, b/c she couldn't finish, or couldn't see the board (even though she asked to move her seat), or the teacher wrote fast and erased everything, etc. I decided to take all these stories with a grain of salt, just in case Elena took liberties with what happened on a given day.

Elena was failing. Her anxiety related to math completely consumed her; she literally spent all her free time doing math, made it very difficult for us to help her, spent so much time melting down over homework--there was no time for anything else, nor a refuge for the rest of us. I tried going through her case manager, but nothing really changed; I tried talking to the teacher, which went nowhere. The school psychologist didn't answer my emails. We found a tutor, who was wonderful, but Elena couldn't keep up with the pace, her math grades stayed low, while her other subjects dropped. She was begging to get out of the course. I went to the principal to find options, and he gave one; switch Algebra teachers, and lose the rest of he classes she loves (go to standard other classes instead of honors classes, and with all different teachers). I was angry and disappointed and unsatisfied with this one choice.

Elena agreed to ANY change, as long as it would get her out of her current situation. She was MISERABLE. She hated school, kept calling herself stupid, sobbed every day at pickup. I kept trying to get appointments with people who might be able to help us, but could never get a meeting to make actual change. I have NEVER had an issue like this with Elena and school, EVER--it was a new, horrible experience for me in the public school system. I finally got a meeting with the principal and demanded that she get out of the class, for her psychological well-being; I requested a lower math class, which was something no one else considered. She ended up changing her long standing F to a C with a major project, and then we switched her to the 8th grade pre-Algebra class.

I have never seen her so happy this year.

Her confidence is up. She is able to spend more time on her other subjects, and those grades have recovered. Sure, I think she needs more of a math challenge right now; we are keeping her tutor, who will "slow-roll" algebra concepts so they will be familiar to her next year, while addressing other issues she has (transcription errors, word problems, organizing work, and fractions). She is working on organizing her schoolwork daily, weekly, on her own; before she was essentially paralyzed by Algebra anxiety/workload. She has time to play, exercise, and stretch, which she didn't before.

It was absolutely the right choice--and one that Elena helped make a reality. I had her make the final decision, so she could own it. We finally had some literal and figurative breathing room.

Thursday, November 29, 2018

And here we are

Hi blogland.

It's been a really, really terrible 6 months.

No joke. I wasn't sure if I could write about

Vivian's epilepsy, horrible complications peaking in August

Elena starting school, first time ever having issues with coping with grade level academics

desperately needing more psych services,

continuing issues at home.

For months.

Then my Dad was acting strangely

diagnosed suddenly with cancer.

I'm ready.

Recaps starting tomorrow.

For any of you still reading,

thank you for your support.

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.


Here's a youtube link to the show! (if you follow this, the rest of the songs are in the sidebar.) FYI, sometimes it's hard to see Elena b/c there is a chair near her in case she fatigues and needs to sit. She didn't during this show, but she has in the past.) Enjoy!

First Song of the Rock Show (I think)

Award-winning song, "Fly to Paradise"

One of my favorites! "Can't Help Falling In Love With You"

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.