How can we quantify it?
1. L will re-take the IMPACT test when we return to Pitt Tuesday. This is a test given pre and post concussion to measure things like recall, retention, speed of processing etc. Theoretically, an athlete has taken this test prior to the season (called a baseline test) and then, in the event of a TBI, can retake it to give physicians some guidance as to the extent of the "damage" cognitively. Some schools do this, some do not.
L has never had a pre-concussion baseline, but she does have one quasi baseline from when she was 12 (post two concussions but theoretically recovered from both). She took the test again a couple of weeks after this incident, and the results were ugly. She re-took the test a few weeks later at Pitt, but I somehow have not gotten those results yet. When she retakes it Tuesday there will be three measures, each spaced about a month apart, to illustrate what progress is being made and what deficits still remain.
2. Vestibular and ocular assessments: for example, tests to measure at what point her eyes lose focus and see double and to measure eye movement and it's relationship to symptom increase.
I'd say, under normal circumstances, performance on scholastic assessments (quizzes, tests, midterms) would also provide a quantifiable measure, but I think it requires more than a half a quarter of production to really look at that.
How can we subjectively measure it?
1. How much is L doing and how does she feel doing it? L reports some pretty nasty symptom outcomes on almost a daily basis. BUT, she is also tackling more and more on 50% of the days. (I believe that that then impairs the other 50%, but there is only so much control I can exert over her when she is at school... ultimately, it is on HER to be intelligent and push it but not overdo it. That may be too much to ask of a highly driven, proud, intense 15 yo with an impaired brain.)
She has taken, and somehow passed, two of her four midterms she has to make up. She seems to be holding at a steady C+/B- range for her tests and quizzes this quarter (a full grade or more below her usual averages, but better than I'd expected...). She is doing these things on minimal studying, since focus and concentration and recall are all still very affected.
She has been all over the place swimming-wise, and what she does is very dependent on how beaten up she is from the school day. Since some days start with 7a physical therapy and end with tutoring, she is not always up for pushing through the pain and nausea to swim. She's actually swimming more than UPMC prescribed, plus doing all the other exercises and rehab.
She seems to be attempting more homework in a fairly timely fashion. She's got a draft of an essay due Tuesday, which will not be very fun for any of us (L puts a lot of pressure on herself under the best of circumstances... when words and ideas are not flowing... let's just say it could be a long weekend...). She's not taking as much extra time on assessments and such as I would a) like or b) think she would, in part because she is too damn stubborn to rest the way she is supposed to so as to stay below migraine level.
2. How is her demeanor? At times throughout this mess she has been hilariously funny (sometimes even intentionally so). At other times she has had the disposition of the mama water moccasin we stumbled on on the trail last summer who told us in VERY. CLEAR. snake language to back the hell away from her babies and move along, quickly. And sometimes I wonder if she is just completely emotionally flat lined. The moments of feeling very sorry for herself are amazingly few. But the moments where her frustration, pain, and/or boredom break out and punch me in the proverbial face are not all that few. I... think ... that the trend has been towards a brighter persona, but frankly I'm too close to the fire to really have great perspective on that one. I try to apply what I learned waaaaaay back when I was 7 or so and my grandfather was dying from cancer: don't get too excited at the good days and don't freak out at the bad days (if I had a buck for every time we raced like lunatics to NY because that man was FOR SURE GOING TO DIE NOW during the two years he was sick, paying for college would be a breeze...). But, honestly, it's hard not to get a burst of optimism on the up swings and even harder not to just sit down and cry in despair on the down swings.
3. Has she started talking about future goals (ie swim meets, classes next year) yet? No. Nothing concrete. She had hoped to be swimming enough yardage consistently and to feel well enough to go to our big meet in Nashville in 3 weeks. I told her this week that she is not going and, while it did NOT go over well, I think she knows I am correct. She is still so photo and phono sensitive that there is no way she can handle a 3 day prelim/final meet, plus two 8+ hour car rides. It would also be wildly insulting, in M and my opinions, to all the people busting their butts on her behalf at school for her to skip two days of school for a swim meet right now. And, honestly, it would be wildly unfair to her sister, C, who is excited for this meet and who should not have to spend her last short course championship meet before college in silence, which is how the car ride and hotel would be at all times were L to attend the meet.
She also does not have any goals academically other than survival. The young lady who holds herself to high standards academically is now more than happy to take a C. What any of this will mean for honors and AP classes in the future is unknown, and, frankly, irrelevant to me. It is not to her, but it is a sign of where she is that she is not actively talking about any concern she has right now.
So, that's the update right now. My gut says she is improving somewhat, but not in any sense quickly. I suppose she could live the rest of her life like this and ostensibly function fine to the outsider's eye, but I don't know how long she can push herself and deal with the miserable consequences of doing much of even simple things. Chronic pain changes people. It changes personalities, and attitudes, and even futures. We'll never have a control group to know what "might have been" had L not gotten these TBIs, and I try not to dwell on it (because it makes me want to puke, or cry, or punch something, or some unattractive combo of all three), but it is always there in the back of my mind.
That's why the support, encouragement, and kindness of people is so very important to L (and to me). And why the absence of it from some people makes me so. very. angry (yes, Captain Ahab, I'm talking about you...) I've always tried to be a thoughtful person and to keep other's situations in mind and reach out, even just by text, to check on them. It doesn't take much effort, but it does take awareness of things and people around you. And I guess it takes making the other person important enough to you. But, I digress.
Were it not for her school, we would be in trouble. Not any one person, but pretty much ALL of the people involved in this situation over there.
- the academic dean who came into our meeting having read my emails and ready with a fluid plan to help L catch up and keep up
- the head of the upper school who has been incredibly supportive and communicative
- L's fantastic advisor who has to be one of the most insightful, thoughtful, and caring people I know, who has spent an inordinate amount of time coordinating and communicating on L's behalf, checking on L, being proactive to help create an environment as conducive to L's success as anyone can create, and even bought an inspirational piece of art for L that eerily mirrored the quote on L's phone
- L's teachers who are a wildly diverse yet uniformly caring bunch (even the gruff one) and who, on a daily basis, say and do things that make me cry tears of thankfulness... from grading with kid gloves to telling her inspirational stories to making her feel very, very cared about.
-L's coach, who has been patient and kind and sarcastic and teasing and generally a whirlwind of making L laugh and feel visible, who will take the time to make up and text mini workouts for her on a Sunday morning or to brainstorm ways to keep her feeling like part of the team.
My parents, who always seem to find something cute or thoughtful to send down to help cheer L up, and my sister and her family, who always take the time to text or email just to check in and see how the day went. M's mom, who calls to check on L frequently. Some unexpected support and friendship from people who have dealt with major children-related health issues. Kind words from distant facebook friends, especially Bret, who has a special understanding of L's world. Without you all... I just don't know.
And of course, the ever steady, every loving, ever positive M (and the ever noisy, fiercely loyal and well meaning C, lol)... our family is as strong as it is because of you. Some men were born to be fathers.
To the people on Team L, I can never repay you guys. But if you ever need us, our family WILL be there.
Off to Pitt and UPMC in a couple of days. On we go.
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