Marty! We Have to Go Back!
Back to the future? No...back to Cleveland Clinic! We have our dates set up, tests scheduled and it's time to get ready to get ready. More on that later.
So...it's been a while since I have updated on Bennett, which was as much for me as it was for anybody else. I needed a break. I did however note that all of last week I was having a harder time coping. I guess these writings are more therapeutic than I thought.
Last Wednesday for example, I threw not one but two objects in anger. Hard. This is not typical behavior for me, and I just had a rage build-up unlike anything I had experienced in a while. Didn't write about it because...well I said I was going to have a Bennett-Free week in the blog.
Thursday, which is the day I take Bennett to the Occupational Therapist in the mornings, was awful. We got there, and he was listless and uninspired, and I feared something was coming. Something was.
In the middle of his session, he had a cluster of over 160 seizures and the cluster lasted around 17 minutes. It was brutal. But I have to hand it to his therapist, Audra, whom I absolutely respect and adore. She sat right there with me, helping us through it, and she was clearly, clearly moved by the experience.
She's amazing...almost ready to give birth to her own child and yet still working at this OT center being as active as can be. She really engages with Bennett (when he is open to it and not too tired or pre-seizure time) and he loves going there. These are a couple of photos of an earlier session.
This month she will be taking maternity leave...we'll miss her and wish her luck and then we'll have a different Occupational Therapist for a while.
So what's new in Bennett's world? Well, he is having pretty much the same amount of seizures as before, there has been no change in that. On Friday, July 3rd, we decided to increase his dosage of Vigabatrin to 2000 mg, his max does, and see if it had any effect. I did some research about how much of the drug is actually released in the urine of patients and decided I was cool with the 2000 mg because of how much of the drug he was actually NOT getting.
As of this writing, not really seeing a very significant decrease in seizures. The plan is to keep him on the 2000 for 5-7 days, then pull back to 1500 and begin weaning after meeting with Dr. Lachhwani. Some other drug, probably Lamictal, will be added when we go back to Cleveland Clinic.
Which brings me back to the whole reason for the update as I mentioned in the opening paragraph. The big news of the week last week was that we did receive all the info we were supposed to from Cleveland Clinic, a very comprehensive information packet, we did receive our phone calls and we were scheduled for the multiple day admission to do the long term VEEG and whatever other tests are to be initiated.
Get this, IS Brothers and Sisters, I learned something about their VEEG format. They allow PERIODIC DISCONNECTS from the machine, with leads on of course, to walk about, play a little while and otherwise get some PHYSICAL ACTIVITY into their day.
How cool is THAT shit? I have never had that experience, and yet it makes complete and total sense, and how amazing is it that they are so concerned about having the child more content throughout the day? They know they will get all the data they need over a period of days, and to show that level of concern for patient comfort is...well...comforting to ME as well.
So the date is set, we are to be admitted the morning of July 24th. Yeah...that was a bummer to me too. I do hate the fact that we have to wait until then. It's going to be a long 3 weeks. But at least we have the plan.
EDIT AS OF 8:00 AM TUESDAY:
Rough night. Seizures at 9PM, seizures at 2AM, then 4AM, then 7AM...that's a first, rapid fire through the night. So yeah um...not sure this Vigabatrin shit is WORKING.