Looking Ahead to the New Year

I'm hesitant to post today, since things seem to change daily, but the neurologist assured me that Monday is the day! Dominic's levels came back and 100 copies of the CMV virus is considered dormant and his were 110. So, it is low enough that they would not treat it with an anti-viral and they are not concerned about starting ACTH now. We could have been admitted at the end of this week, but we were hoping not to ring in the New Year in the hospital. So, the doctor feels comfortable starting the treatment on Monday. So that's the new plan!

New Year's Resolution

The reason IS is considered a "catastrophic" form of epilepsy is because is causes developmental delays. We have already started to see regression in Dominic's development, which is devastating to see. From the day he was born he would try to hold his head up on his own. He was a strong little bugger. He is 3 months old today and can't hold his head up anymore, it's almost like holding a 12 pound newborn. So, just like most people who make the new year's resolution to exercise more, Dominic has the same resolution. He has an occupational therapist that comes once a week to teach us different exercises to help strengthen his neck and muscles. Tummy time is a struggle but we do it. And we've found the Bumbo seat helps with his neck strength too. Some kids with IS only have delays, while other's development stops altogether. We're hoping with enough exercise and "strength" training that Dominic can get back on track developmental. We realize he'll be behind, but any progress at this point is a good thing. And hey, who knows, maybe the steroids will help with his strength. It works for body builders, right?

As we look ahead to the coming year, we have no idea what the future holds. But even with everything that has happened in the past month, we are sure that our greatest gift of this year has been little Dominic. Although his condition has brought a lot of tears, heartache and worry, he himself has brought us great joy. Just looking at his little round face makes our hearts melt!