The Winter Hypothesis

November 5, 2015 - The Last Smile
I had a love/hate relationship with this picture during the Dark Times. 

I  sometimes refer to the Winter of 2015 as the Dark Times in our family. I call it this because from November 6th 2015 to February 21st, 2016, Cyrus did not smile. Not once! And that's not to say he wasn't expressive at times. He was! He could make the cutest and strangest of faces, but it was never a smile. And even these instances were often few and far between. More often than not, he was stone faced, distant, and out of it. I called him the zombie baby when he was like this.

December 2015 - Super expressive day!

This is most likely due to the fact that he was having multiple seizures a day. I believe sixteen was our record for one day, but we did get it down to three to five fairly quickly and that number just kept going down as the year progressed. The biggest drop was when we adopted a new medicine in February of this year, which I credit to bringing back those smiles.

But here's the thing, after that, even with no increases in meds, the seizures kept dropping. And in June, he stopped having seizures altogether, again with no increase in medicine. And he stayed seizure free almost all summer long.

When they made a resurgence, we attributed it to a growth spurt (because he had grown so much in so short a time, his original doses were no longer cutting it). They gradually became worse and worse and in October we made a dramatic increase again. And he was again seizure free! But this time it only lasted about two weeks.

I got to thinking, and I really feel like he's struggled a lot more now that it's gotten colder. His meds just don't seem to get him as far. Thankfully the smiles and giggles have not vanished altogether even if they are harder to provoke, but he seems just out of it or resigned more often again. I don't like it because it brings me emotionally back to the Dark Times!

February 2016 - One of the first returning smiles! 

Now, I can't really say for sure that it's the cold that is causing this. This is an anecdote and even in Cyrus's case this is literally only the second full winter of his life, so I literally only have one and a half data points.

But the hypothesis does have a certain appeal to me. His disorder is metabolic in nature - which means that his body has a hard time producing all the cellular energy that it needs. So in the winter, when he has to expend more energy than normal staying warm, he might have less on hand to meet his neurological needs, resulting in more seizures and less cognitive engagement in general. Whereas during the summer, when it was warmer, he didn't have any seizures and was beyond present all the time!!

I take comfort in the fact that this winter so far has been far better than the last. And even if we haven't remained seizure free, we've avoided the status events. I am amazed at how much this little guy has grown! And so excited that he has continued to make progress on his milestones.

November 2016 - Learning to self sooth!

Just in the last few weeks, he has outgrown all his socks and needed a new winter wardrobe. I realized in trying to order replacement socks that I actually have no idea what shoe size he wears. He has shown some precursors to crawling by consistently getting up on is knees. And going through the trauma of cutting six teeth at once apparently served as sufficient motivation to figure out how to get his fingers in his mouth! Maybe some self feeding will come next!!

In other milestones, Kyle and I hired an actual real life baby-sitter! Trained her a bit in our emergency protocols, how to feed him, and how to medicate him. We went and saw a movie together - Arrival. And I have to say it was one of the best movies I have seen in a long while! I must admit there was a scene in like the first five minutes that made me cry! Dealt with the human experience, language issues and how alien real life aliens would be extremely well. Highly recommend!

And this week, Kyle and a friend also released a cell phone game for Android that he's been working on part time on and off for the last year in-between caring for Cyrus! If you like puzzle games, this is a totally free way for you to support our family! Just get addicted to this little ninja game! And when you see an ad, know that its revenue is going towards Cyrus's care!

December 4, 2016 - Cyrus is not a huge fan of sushi apparently.

December 4, 2016 - But he had a grand time at Eugene's house!