Another week has passed by, and Lim remains stalled in constant headacheville. Some small improvements have been noted in her demeanor and academics (where she was failing she is now getting low Cs, woohoo), but the progress is snail pace slow and she/we struggle sometimes not to get discouraged. The pediatric neurologist at Shands still believes Lim will make a full recovery, but it is tough to picture that happening anytime soon. If she could just go an HOUR without the headache... just an hour...
Lim has tried to bike on her trainer a few times and she swam once. Both cause her headache and dizziness to skyrocket, and she can only do either for 10-15 minutes. It is encouraging that she wants to try but wildly discouraging that she feels so awful when she DOES try. (This and other things cause me to flashback to Flowers for Algernon repeatedly, a book that deeply affected me the first time I read it AND when I read it again recently)...
I found her sitting in her room the other day, sadly looking at some pre-concussion papers/grades. As it has become blindingly apparent that she will not be racing the kids' triathlon in St Pete in a few weeks, or the Ironkids in Orlando in mid-may, she's gotten visibly more frustrated. She also knows that Gator Swim Camp in June, which she and Bim have been so looking forward to doing (they've never gotten to go to a sleepover camp before, and some teammates/friends are going as well), is looming and that she can't go if she is not in some kind of shape (assuming she is even feeling better by then).
I look at the pics of her playing flag football and soccer as they cycle through my computer screen saver, and MY heart sinks. I can't imagine how she feels.
She definitely has developed a keen sense of appreciation for things she is now missing. She has gotten animatedly angry at some of her classmates at times for, in her opinion, being disrespectful to the teachers by either not putting effort into assignments or not taking them seriously. I doubt I will hear much grousing about morning practices if she ever gets to participate in them again. She has not complained at all about a school assignment or homework either, as right now she is grateful to be able to even participate to some extent.
Lim is back to what seems to be a full workload of homework now in several classes. She participates in quizzes and tests now as well, although the teachers are not writing grades on her papers (which is nice, but she can still do the math to figure out a 6 out of 10 is a D). I have no idea if her grades are counting or not right now, and honestly I really don't care either way. Lim does, but I keep reminding her that 6th grade grades go nowhere and no one will ever see them. Her response: "I will see them and the teachers will see them!" - yes, true, but, everyone who matters knows what is going on right now.... which is small to no consolation to a child who takes...well, took... great pride in being a conscientious and successful student.
Her main problem, hopefully caused by the headaches, is what I consider "concentration" or focus -- she forgets to finish a math problem, or forgets to add two things together, or can't retrieve the name for an object or concept. Apparently words like: elephant, s'mores, ax, ruler, scale etc are stored directly behind the left ear. I've also found her substituting similar sounding words for things I know she knows (I can't think of a good example right now, but it is pretty funny when she does it..) and I've seen her struggle repeatedly to recall the right word for concepts she is trying to name. I suppose it is quite possible that she has incurred some degree of permanent damage because of this, but until the headaches check out we really won't know.
It is coming up on 10 weeks since the concussion. Sometimes it is hard for her, and me, to believe it will ever change. The headache has been omnipresent at this level for 8 weeks now. We stopped the Elavil completely rather than ramp it up to 30mg/day, as she was a walking zombie on it and it had no perceptible positive affect on her headaches. No OTC pain meds do any good for her headache.
Lim gets physical therapy 3x/week now, and, while Libby feels like many of the issues in her neck are starting to clear up a bit, there has been no perceptible change in the headache AND she is very sore from the exercises and manipulation. I keep telling her that it can take a long time for PT to really help, and that it usually makes you feel worse in the short-term because it makes everything sore and cranky. But, even I am starting to lose faith that it is going to really help.
We go in for cognitive testing in a week or two at Nemours, although I don't have any idea what that is supposed to show other than that she is impaired. Since the Drs have said that she won't be considered permanently disabled until this has gone on for a year, I don't see the point, but...
Another weird byproduct of this entire thing is Lim has become somewhat spooked by all things unknown. Death, illness, unexpected accidents or events, cancer, and any other sort of bad but uncontrollable and unpredictable thing you can imagine all seem to loom large in her mind, and she gets scared (especially at night) and does not want to be alone. She seems to be focusing on the scary and bad things out there... and it does not help that she is still not sleeping very well at all, so in addition to chronic pain she is rather zombie like at times with deep black circles under her bright blue eyes.
So, it is a mixed bag to report right now. Small indicators of progress mixed in with discouraging glitches and constant pain. Sometimes I wonder if this is all my fault, because I have not hesitated to express my amazement at the girls' accomplishments and my appreciation of their gifts. Funny thing is, I am just as proud of Lim now as I was before this happened, as she is a fighter and is slowly clawing her way back academically (and I know each "grade" she gets represents effort on her part, which is all I ever care(d) about anyway... doing your best, whatever that may be)... I just feel acutely ill trying to help her walk the line between pushing herself to work her way back AND accepting herself as she is now (ie being kind to herself and understanding that things just are not the way they were right now...).
It's a weird place to be -- we can't really go through the process of mourning what is lost because we are not really sure what IS lost permanently, or when we might know. It's an awful limbo with no end in sight and no clear path to follow. And, when you hunker down to get through and then look up and realize another week, or two, or a month, has passed without significant change in the underlying problem, it's hard not to get washed away in the flood of desperation and despair and anger. So, you withdraw and wallow in your own muck for a few, cry a bit, curse like a longshoreman, vacuum up the endless dog fur, chug some chocolate milk, and go swim. At least, I do.
...that's my why, what's yours?
No comments:
Post a Comment