I've been thinking a lot since we got home from the hospital on Monday. What my life is going to consist of for the indefinite future. How much things can change in a short period of time. (Can you believe it hasn't even been three months since Eddy's first seizure? It feels like about three years.) How it's so easy to take things for granted when life is easy and everything is going well. How, if my life gets back to "normal" (whatever that is), can I make sure that I no longer take peace and normalcy for granted?
Eddy has been doing great since we got home from the hospital. No seizures in eleven days, his physical development is continuing to come along. He's crawling faster, pulling up and getting into a sitting position easier, and cruising along furniture more every day. He seems to have gotten used to his new seizure medication and seems to be increasingly more "with it." He's starting to make more sounds, although verbally he has a long way to go. One of the things that I'm the most scared of is Eddy being non-verbal. A lot of the genetic disorders and metabolic disorders that have seizures and developmental delays as symptoms result in non-verbal future outcomes. I know that things could be worse than that, but I really want Eddy to talk. Badly. His speech therapy was just increased to 8x/month (it was 4x/month) and I'm hoping that helps. If he just started talking, I would feel so much better about his future outcome.
I'm also really worried because, looking at past experience with Eddy, he seems to do really well after starting a new seizure medication, but a short time later, it seems to stop working and he starts having seizures consistently once again. I'm really hoping that doesn't happen with the phenobarbital, but I know it's a possibility.
I got a phone call yesterday afternoon from Cleveland Clinic. I had called the previous day asking about the results of Eddy's PET scan. A nurse called me back and said, "His PET shows mild assymetry with left temporal glucose being mildly low, possibly reflecting recent seizures." Um, what? I like to think that I'm pretty smart, or at least I can do a good google search when I don't understand something; but an hour's worth of research resulted in me having no idea what the heck the nurse was talking about and thinking Eddy might have Alzheimers Disease. (If you google that exact description, a few pages about Alzheimer's comes up.) I asked the nurse what that meant and he said, "I don't know, Dr. Gupta spoke with Dr. Weinstock and he will discuss the results with you once he receives the written report." Of course, I immediately called Dr. Weinstock's office and am currently waiting for them to call me back about the results.
If there are any doctors out there with experience in brain PET scans and can kindly explain to me the results of Eddy's scan before Monday, I would greatly appreciate it. :)
I've been a little discouraged lately because I feel like I'm chained to my house. The doctor in Cleveland said that he believes Eddy is the type of kid who will get sick easily (hence the double ear infection two weeks ago when I was trying hard to keep him healthy), and when he's sick he will get seizures. So he advised us to do what we need to to keep Eddy healthy. This basically means that I need to keep Eddy away from people who spread germs, and these people are usually little kids. And all of the places I would take Eddy to socialize (play group, the YMCA, etc.) have little kids around. I know that I will (hopefully) be less paranoid in the future, but for now I'm keeping Eddy away from as many germs as I can. And that means we are a lot more isolated than I would like to be. But this, too, shall pass I'm sure, and I just have to keep reminding myself that. It's much better to be "chained" to my spacious new house than the hospital! (It could always be worse...another thing I regularly remind myself of.)
Ed and I got a card today from the great people at Olean High School, where I taught math for two years before resigning this past year to stay home with Eddy. They included a very generous gift certificate and gas gift card. The card was signed by dozens of faculty, staff, and students I used to work with. It was so touching to know that so many people are thinking of us and praying for us. Thank you so much Olean High - you are so kind and generous and we really really appreciate it.
And thank you to everyone who has continued keeping Eddy in your prayers and thoughts. We are so lucky to have all of you in our lives.
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