Normally I'm not in the "Christmas spirit" at all by December 6th. But this year, I was in the Christmas spirit in November! It worked out perfectly that our first big snow fall of the year was on Black Friday, because Black Friday is the first day we are "allowed" to start thinking about Christmas. It's also the day that we get our Christmas tree. This, coupled with the fact that my husband actually watched a Christmas chick flick with me on the Hallmark channel last week (Is there anything better than Christmas movies on the Hallmark channel?), has resulted in me being more in the Christmas spirit than I have ever been at this time of year (Other than, probably, my entire childhood.)
I just re-read the above, and I saw that I have already used the word "Christmas" eleven times. I guess this is what happens when one starts a post not knowing what one is going to write about. I hope you will all forgive my stream of consciousness.
So on to Eddy...that sweet, fun little boy. Eddy is doing amazingly. The bad news is that he has had several seizures since my last post. He had two on the morning of Sunday, November 18th. They were really short (2-5 seconds), tonic seizures. I was a mess, and was so disheartened. The second seizure happened in church during the sermon, and I did everything I could not to cry for the remainder of the service. The President of St. Bonaventure, Sister Margaret, asked us how Eddy was after the service, and I could not control it anymore...I just started crying with Sister Margaret watching. I did everything I could to keep it together but the tears kept flowing. It's a good thing she is one of the kindest, most compassionate and understanding people out there...She just kissed my forehead and sat with me for a few minutes. (Thanks Sister Margaret!)
The next day, we were able to get in to Buffalo for a 24-hour EEG. Eddy had been doing the startle reflex thing all the time when he was sleeping, and Ed and I were so worried that his infantile spasms had come back. His two seizures looked like prolonged startle reflexes. His arms came up and he remained rigid for a few seconds. He was startling himself in his sleep constantly. (His sleep has been appalling for the past several months, but this was getting even bad for Eddy's sleep standards.) Monday evening in the hospital, Eddy took a nap and did the startle reflex about ten times. We pressed the button every time (You press a button when you think he may have had seizure activity, his EEG gets marked, and the EEG reader looks specifically at each of the marked times), and it turned out that three of the ten were in fact seizures. The good news, though, was that they weren't infantile spasms (although they looked just like them.) They were just really short tonic seizures. So...after this EEG, we were feeling relieved that they weren't infantile spasms, but dismayed that he is still having seizures (and three during one nap time!). I think the relief outweighed the dismay, though, because I decided to buck up and focus on the positives following this news. It could be much worse, and I was going to be thankful for everything we had with Eddy. He was continuing to develop and grow into a sweet little boy by the day, and I was going to focus on this rather than the fact that he is still having seizures. I guess after over a month of no seizures (that we saw), I was getting optimistic that he wouldn't have any more. Looking back, I know that this was naive, but it was really nice to feel so hopeful for at least awhile.
A few weeks ago when he had his two seizures, Eddy had just gotten a flu shot a few days before. Also, the week before, we started trying to wean him off of keppra. We just dropped his dosage from 3.5 ml to 3 ml, which didn't seem like a huge deal to me, but that could very well be why he had his seizures...or it could have been the flu shot. I keep looking at every single thing that it could possibly be, but there's no way of saying for sure what has caused his seizures. This week, I'm almost positive it's because Eddy has a cold. He is such a sensitive kid, and we knew that when we was sick, he was going to be more susceptible to seizures.
Let me talk about what Eddy has been doing lately. This kid is such an inspiration. He is improving so much in such a short period. In the past few weeks, Eddy has started climbing up walls and walking just touching the wall, cruising on every surface possible, walking with his push giraffe (I was so excited when I saw him walking alone just holding onto the giraffe!), signing for "video," (He's still obsessed with youtube videos on the alphabet), today during speech therapy he signed for "phone" four times! The thing I'm happiest about is his TALKING! He is babbling a lot now (bababa), he is trying to make raspberries, he says "up" ALL THE TIME!! He says a word!!!!!!!!!!!!!!!! It started out just as "UHHHHHHH" but in the past few days, he's added the "p"! Also, this week, he has started saying "ma ma!" He'll say "ma......." then wait a few seconds and say "ma" again! It is the funniest and cutest thing to hear. He also loves giving kisses now, and he loves kissing "Eddy in the mirror." He has this farm book that is his absolute favorite book, and he'll flip through the entire book and look at all the pictures, and when he gets to the blacksmith (because what baby farm book doesn't have a blacksmith??), he KISSES the blacksmith! Every time! It's so cute.
So I am done gushing about Eddy...but basically I just wanted to share that, despite some difficult and disheartening times in the past few weeks, Eddy is doing great and we are so happy and thankful to have him.
And we are so thankful to have all of you, who care about us and Eddy. And we wish you all a joyous and happy holiday season, and a very Merry Christmas.
