The neurologist diagnosed the type of seizure our Son is experiencing. They are called infantile spasm seizures. The label alone is heartbreaking. No infant should experience such discomfort.
Although they are always painful to watch, Nicky's seizures have improved over the past couple days. Rather than having several, that would last 10 minutes or longer, he is down to one or two a day, lasting under 10 minutes. Hopefully the increased dose of medication, and this new medicine, topirimate, is helping. Although we do not like adding more medication, we are grateful for every minute he is able to rest. We would give anything for him to have a good night's rest.
Nicky has also did well in Physical and Occupational Therapy this week. Susanne and Lisa are doing a great job with him, and they are very consistent, which is what he needs. They put this poor boy through a work out! He has a long way to go, but it good to see him move his arms and legs. He also shows emotion through adorable grunts and coos; it is as if he is telling the therapists to leave him alone!
I would do anything to stop this disease. I say it weekly, sometimes daily, that I would trade places without hesitation. If someone told me to jump from a cliff, and Nicky would feel better, I would jump without hesitation. Alas, it is not that easy, and we must continue this fight, and stay strong for our baby boy, and find something that will help him!
My boy is resilient. He is a Torpey, and he is strong!
Love, Dad
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