Because it was so early in the morning, I guess. We had to leave at 3:30am to make it for the first appt at 8am. Damon needed to use the potty when we stopped for breakfast and med dispensing, but was shivering horribly from the chill. Haha, should have made it easier!
We had 4 appts this trip. We've never managed to get that many all in one day, let alone back to back like they were. It's just not really possible with how they do their scheduling there.
It was EXHAUSTING! and I'm not even sure it was worth saving one other trip, for not only how we are paying for it, but the boys too... especially Jace. :(
Finally getting some sort of an answer regarding specific symptoms the boys have, but it's one of those, "it could be this, or this," answers. I'd much rather know the "this or this" than to be completely ignored though, so I'm not complaining. We are looking at either another type of seizure, or a neuro transmitter disorder that is genetic. Aidan has already been tested for the most common of these genetic transmitter disorders and it was negative. But there are others. Goodness knows we've already got seizures in the mix. Confusing for them and for us.
Damon's keppra is doing it's job well, and we are willing to put up with the rages. Neuro is comfortable with keeping things as they are if we are. Grateful he is.
Jace's depakote dose has been increased. Again, grateful. Especially now.
Both Aidan and Jace had some genetic testing done. Not sure what it's all for this time, but the metabolicist said he kept feeling he should, so he did. Grateful. Even if they all come up negative, I respect a doctor that listens to those nagging feelings.
Had lunch with my brother Steve. I loved getting to see him. I ache to see him more often, and wish I could be a help to his family.
Finally getting some sort of an answer regarding specific symptoms the boys have, but it's one of those, "it could be this, or this," answers. I'd much rather know the "this or this" than to be completely ignored though, so I'm not complaining. We are looking at either another type of seizure, or a neuro transmitter disorder that is genetic. Aidan has already been tested for the most common of these genetic transmitter disorders and it was negative. But there are others. Goodness knows we've already got seizures in the mix. Confusing for them and for us.
Damon's keppra is doing it's job well, and we are willing to put up with the rages. Neuro is comfortable with keeping things as they are if we are. Grateful he is.
Jace's depakote dose has been increased. Again, grateful. Especially now.
Both Aidan and Jace had some genetic testing done. Not sure what it's all for this time, but the metabolicist said he kept feeling he should, so he did. Grateful. Even if they all come up negative, I respect a doctor that listens to those nagging feelings.
Had lunch with my brother Steve. I loved getting to see him. I ache to see him more often, and wish I could be a help to his family.
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