We'll Always Have Toshi Station
Bennett had an appointment today with an Epileptologist who he has seen before here in town. I haven't written much about her, the new doc, only because I was going to put those experiences in the 'History' section, and wasn't sure how much I was going to write.
Don't get me wrong, I think very highly of her, she is the doc who prescribed Vigabatrin for Bennett a month or so ago, without hesitation or reservation (RESPECT!) and who we saw before we went up for the Detroit tests.
As far as appointments go, there isn't a lot to talk about. The plan is to continue to see how things go with the Vigabatrin, and then advise her in a week or so about his progress. There was some talk about the PET scan, about other tests that might need to be performed to determine whether surgery would work for him, etc.
Now, you might be saying...Hey...Lilly, this is not like you, you usually have textual diarrhea in here, why are you playing it so close to the chest?
Well, because I don't know what we are going to do.
Here's the thing.
Like I have said before, we have to, as parents, make some decisions that we have not made yet. Where is Bennett going to receive his primary care and, if determined possible, his surgery? And I think, actually, that until that decision is really MADE, there is going to be a tepid nature to these local visits.
I'm sure this hesitation on our parts is something that is not hurting Bennett. We still have steps that must be taken twixt now and then, but we really need to shit or get off the pot fairly soon and make some choices. I'll talk about those choices later, but for now, let me address The Big Question, the one I get pretty much every day.
How is Bennett doing on the new medication?
Now, before you start celebrating, always remember the words of Winston Wolf from Pulp Fiction. And just to be fair, I am going to write it here in white, if you wanna read? Highlight the blank area...if you are easily offended, just go down to the next paragraph, K? After Jules and Vincent express some relief as if The Bonnie Situation is resolved, Winston reminds them...Well, let's not start sucking each other's dicks quite yet.
Yeah it's harsh...but hey, sometimes HARSH is how I feel.
If I can lay it out in a Novakian manner, he is having less seizures, that is a fact. They are less intense at times, that is a fact. Sometimes they are just as intense, that is a fact. He is still having, on SOME days, upwards of 100-150 a day, that is a fact. Some days he has had maybe 40-50 only, that is a fact. He is not seizure free, that is a fact. We still have twice as much in the way of dosage increases twixt now and when we'd have to call it a failure, that is a fact.
He is, however, much more energetic, lively, engaging and apparently happy. I'm not sure if this is because of the Vig or because of the fact that he is finally almost totally off Keppra and Topamax, two Zombie-riffic medications. This past week he has engaged in a couple of behaviors that are 'new', that may show some level of cognitive awareness that he previously was not showing.
Now, why am I saying it like this? So...I dunno...timidly? Because you have to understand what all this means.
Not a lot.
My IS Brothers and Sisters will understand EXACTLY how I feel, but those of you who do not fall in to this category, I write it this way for YOU, because you have to know that if I say Bennett is doing better on a medication, you cannot view this the way someone says they feel better when they are recovering from the flu.
No corner has been turned here, is what I am trying to illustrate (badly). There is progress, there is cause to be positive, there is cause to be hopeful, but we are a long, long, long way until Bennett's problems are solved, and they might NEVER be.
That is the nature of the disorder, and I am trying to talk about some interesting progress with Bennett that I saw this week and be sure that those not familiar with how this ride works don't start celebrating because I say Bennett is doing better.
He is better than where he was last week, but it might not last, the Vig may fail, his condition may flip and get worse...all that shit happens on these med trials with this disorder.
If blowing up the Death Star is actually having confidence in seizure freedom with an apparent return of cognitive and developmental abilities in Bennett that show that he can have a good chance at a fairly 'normal' life, then we are still on Tatooine, whining about not being able to go to Toshi Station to pick up the power converters.
Hope that puts it in perspective.
Now that I got THAT out of the way, what has changed this week? Allow me to be specific. Here are a few examples.
1. Someone sings Row, Row, Row Your Boat...Bennett sways and makes a distinctive 'R' sound and tries to mimic this. You can almost hear the sound 'Ro' repeated. That's pretty big. Repetition of what he sees and hears and then trying TO COPY IT is key to his ability to learn and retain and grow mentally. It is possible that this Vigabtrin is maybe calming the overall hypsarythmia. No way to know that without EEG data.
2. You know how you put your hands over your face and talk...'Where's Daddy? Where'd Daddy Go? Can't Find Daddy? Who's Your Daddy, Bitch?' Oops, not that one. Anyway, then you open your hands and say 'PEEKABOO!' or 'THERE HE IS!'. Now, before last week Bennett essentially ignored this tried and true classic. As of this week, he does engage, and he even will grab your hands, pull them down just to get to the 'carrot' of the smile/laugh faster. That's big.
3. Up until now, Bennett has shown little to no interest in the Television. This week, he has watched some, for upwards of around 4 minutes, without going somewhere else. That's a big deal. Sustained interest in an activity, especially a 2-dimensional one, is important. He generally does not stay focused on any one thing for long.
Anyway, those are the top three. I mean, let's be blunt, the boy is SERIOUSLY DELAYED. He cannot communicate even the most basic of concepts to us. He doesn't know how to tell us he's hungry, thirsty or anything. Any signs we taught him prior to the start of this are gone. But...he is doing some things that make me wonder if something is going on in his noggin that is allowing his brain some rest time in order to learn.
Some of you might think I should be more hopeful. I don't disagree. I am cautiously optimistic, but I usually am when it comes to this. But even though we have only been at this for nearly five months, I have seen changes happen, things look good and then see them go bad. You have to be steadfast against the ups and downs, to preserve your sanity.
But you know me...I'll always keep you posted.
For anyone keeping score, the next steps are:
Ophthalmologist appointment tomorrow. Jen goes solo since I took care of Bennett today all day.
Neurosychology appointment is being scheduled.
Continue with his Occupational, Physical and Speech Therapy. Speech is three times a week, OT once, PT is once a month.
Evaluate his behavior/seizures and advise local doctor. Vigabatrin increase again tomorrow, Keppra cut by half again tomorrow. Topamax gone in five days. Zantac added.
Jen and I need to make a decision about Cleveland Clinic. Do we investigate that as the next option or try to return to Detroit or try to have his care managed locally? An appointment was scheduled for next Wednesday at CC, but we probably cannot keep it because all our records are not in our hands. We may have to reschedule.
And that's the latest.
I have GOT to start writing shorter blogs.