May 4, 2008 was the first day that I noticed Elisabeth doing something odd...almost like a hiccup. It was a Sunday and we were at my in-laws for dinner. I called a few people in to watch her, but everyone was quite sure that I was creating something out of nothing. Well, those 'hiccups' grew and grew over the next few weeks. She was diagnosed with Infantile Spasms at the end of that very month.
Since the spasms began we have seen her progress very little. This is to be expected of a baby with Infantile Spasms. But even more characteristic of these devastating spasms is that children move backwards developmentally. It is heartbreaking...especially for a little baby like Elisabeth who has fought so hard to hit each milestone.
Sadly, it occurred to me last night that I haven't seen her roll over lately. I asked Donald about it and he hadn't either. I've thought and thought, and I can't remember the last time I saw her roll. It must have been a week or so...maybe longer.
Looking back in my blog archive today I found a post that I had written on May 5 titled 'Rolling Over'. How ironic that it was the very day after the spasms started. Now, after almost 5 months of searching for a cure, the spasms have robbed her of the ability to roll. It is tragic.
Elisabeth and I are off on a trip to the neurologist today. I think it's time to officially call it quits on the ketogenic diet. I cannot waste time hoping that it will miraculously start working when my baby's brain is being destroyed. Think of us today, and pray that her doctor may be guided towards the right solution. Time is of the essence.
