It had been 17 marvelous, seizure-free days, and we were getting pretty optimistic (although I was trying not to get my hopes up.) Then, early Saturday morning, around 4 am, he had a short grand mal/tonic seizure (not sure which one - his body went rigid and his eyes rolled back but he didn't shake and it only lasted 15 seconds.) Then, an hour later while I was rocking him, he had another quick 10-15 second seizure. He had been acting weird since he woke up at midnight, a lot of twitching and startling (which very well could have been infantile spasms...we never know when he is actually having them.) So, I wasn't surprised when he had the seizures, just disappointed. I don't know how much longer Ed and I can handle all of this. I know they say that "God doesn't give you anything you can't handle" so I'm assuming God is under the impression we can handle this...but not much more, God. Please make Eddy better asap.
On a positive note, there are a lot of great things going on with Eddy. His development is seriously improving at a faster rate than I have ever seen it improve. He started crawling this week! One day he could only take one "step" on his hands and knees, the next day it was two, and all of a sudden he is legit crawling! Also, he is pulling up on EVERYTHING. Last night I looked at the baby monitor after hearing a little rustling, and I see Eddy STANDING UP in his crib! That was a shocker. The only problem is that he doesn't know how to get down from standing up yet, so I took off running towards his room. When I get there, I see a smiling baby who had just (fortunately) landed on his soft blanket, not the side of his wooden crib. Then around 3 am, I look at the monitor, and I see a baby standing up once again. He's definitely practicing this new-found skill at every chance he can get. He is also clapping all the time now, and it's so incredibly cute. I love that when a baby discovers something new, they do it over and over and over again.
I think the scariest thing of all of this is that the future is so much "up in the air" right now. Ed and I are planners. And we have been very lucky in that everything has worked out perfectly for us up to this point. We had a perfect "courtship" (Do they even use that word anymore??) for three years. We had a perfect wedding when I was 24 and he was 28. We had a perfect three years of traveling to exotic places, enjoying married life, having successful careers, and then we had a baby. I always wanted a baby when I was 27 and I had Eddy when I was 27. Ed and I have always been hard workers, but we have also been very fortunate too. Everything has worked out exactly as we wanted it to. So now, with not knowing what the future holds for Eddy and for us, it's scary. Really scary. I know that we will handle whatever is given to us, but not knowing whether Eddy will be "ok" or not is really hard.
But, when I get scared (and it's quite often), I think of all of the amazing people that we have in our lives, and it makes me feel better. Our families and friends have been so supportive and kind. My parents have gone above and beyond the call of parenting and grandparenting duties. They were at the hospital in Buffalo every day. They stayed at my house for two days after we got home because Ed was sick and couldn't be here. They are always offering to watch Eddy and give us a break. Thank you mom and dad for being the best parents and grandparents in the world!
And thank you to everyone reading this, and supporting us, and for all of your kind words and prayers. Please continue praying because the next two weeks are going to be huge for us. This week we find out the results of Eddy’s genetic testing, and next week, he has his long-term EEG, which will tell us how his infantile spasms are doing. We really, really appreciate your support and prayers.
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