In the two weeks since we started Jack on the anti-seizure medication, there've been some pretty significant ups and downs. His initial dosage was too high, and it caused serious back-end weakness to the point that he wasn't able to go down our stairs unassisted, and was frequently unable to get up from laying down. We have laminate floors through our entire house, so his weakened limbs couldn't get the traction he needed to get up and down easily.
We cut his dose down from 100 mg x 2 per day to 75 mg x 2 per day and that really caused an improvement in his control and strength, while still controlling the seizures. He hasn't had a seizure since he started on the medication.
He was positively perky yesterday and today, jumped up on me with excitement, and went for car rides on both days. He's doing as well as we could've hoped and better than we could have expected at this point. We know that his days are still numbered, but every day is a gift from here on out.
My daughter is getting married in October - and if he makes it all the way to October, he will have a role in her wedding. I don't dare to hope for this, since it seems so impossible that he will still be with us then. I am hoping that he makes it to one more spring - my husband and I would love to be able to take him over to the coast and let him play in the surf one last time.
Here he is, young and strong.