Long time, no blog

It has been 9 days since my last confession.

Actually, I've really enjoyed creating this record of Lively's experience. I recently saw that blogger allows you to publish your blog in book form, and I have a vision of an alternative baby book that we'll read with Lively one day, when everything is better and we can look back on this and laugh.

I write that with a bit of sarcasm. There's not much that's funny about this situation. Also, intellectually, I realize that everything might not get "better," but I continue to find myself thinking that it will, that Lively will come out of this with no motor or cognitive deficits, that he will reject his academic scholarship to Harvard for U of M (to be closer to mommy and daddy), that he will be a piano-playing prodigy with hundreds of friends because he will be such a well-adjusted, nice, cool, fun boy.

I've also been thinking of a patient I helped care for when I did my gyecologic oncology rotations as a resident. I met her many times during my 4 years as a resident. This woman had ovarian cancer, and she was cared for by her sister. The patient had been quite sick for years. She was in and out of the hospital multiple times. She lost so much weight that she was quite literally wasting away. She wasn't able to eat solid food; her only caloric intake was from a tube that went directly to her small intestine and fed her mostly-digested formula. She had increasing pain, and ultimately was admitted to the hospital with severe pain and respiratory distress so severe that she was barely conscious. And after half a day like this, she died. Her sister, who experienced her long, slow decline every step of the way, was absolutely shocked when she died. She had convinced herself that this ovarian cancer was a bump in the road, that her sister would get through it and recover, despite failed surgery and multiple failed chemotherapies. Despite the obvious evidence to the contrary, she never believed her sister would die, and so when it happened, she was completely unprepared.

I'm thinking of this because every day, I find myself thinking, "When all this is over . . . ." In my heart, I realize that I don't believe that Lively will have any permanent deficits. Sometimes, I worry that I'm not preparing myself for the possibility that he will. Sometimes, I wonder if I'm still in the denial stage of coping with all of this (although I'm finding myself feeling like I'm in stage two more and more!) I've always felt that it's better to be prepared for not-so-positive things that may happen in the future, but I'm wondering more and more if I'm more like the patient's sister who refuses to believe that her sister is actually sick.

The changes in Lively's appearance and behavior hit home for me this week when I saw this video that Pete took about one week before Lively's infantile spasms began:

Again, it's easy to see the dramatic change in his appearance. What struck me the most about this is that Lively was babbling at this time. He was not just cooing (oohs and aahs) but he was making consonant sounds also (mamamamama). He's not doing that anymore. So seeing this made me really sad. I worry, of course, that his speech won't ever come back. Actually there's a very good chance that it will -- his stroke did not affect the speech centers in his brain -- but I'm his mother, and worrying is what mothers do.

Here's a contrast video that I took about a week ago. The quality isn't as good, because I took it with my iphone, which doesn't have a video camera. Pete recently went to a technology conference and learned about this app that turns the phone's regular camera into a video camera, and, as Pete says, the best video camera is the one you have in your hand.

He still vocalizes, but I feel that he has really regressed in this particular area. This video also shows how Lively is posturing with his left hand now, as I mentioned in my last post. We don't know what this means yet (is it a seizure? is it motor dysfunction?), and there's no way to know right now.

The real reason that I haven't updated recently is that I'm absolutely exhausted. Although we continue to wean the ACTH, Lively's sleep patterns are worsening. He wakes up every 2 to 3 hours at night ravenous and inconsolable. Instead of nursing and going back to sleep right away, he's up for an hour or so each time. He's so hungry that I can't fill him up just by nursing, so I've been thawing the frozen breastmilk from our freezer, and our supply of frozen is rapidly diminishing. The nursing and lack of sleep are taking a huge toll on me. I haven't had a good night's sleep in 2 months, and we have at least 3 more weeks of this, assuming things get better when we're done with the ACTH.

Here are a couple more recent photos. I love this one because of the way his hair is sticking straight up in the back. I'd be happy if it would always do that!

These pajamas inspired his room theme (which is John Lennon/Beatles). Here's a photo of my favorite part of Lively's room (I blocked out an annoying price bubble on the bottom right). I just love these for my little guy's room!

Finally, here's a photo of Froggy Boy after his bath a couple days ago.

Again, Pete and I are so grateful for all of your kind words and thoughtfulness during this difficult time. Despite what we're experiencing, we feel lucky to have so many people who care about us in our lives.