It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.
Bennett's Story Part 1: Ahead of His Time
Bennett's Story Part 2: The Calm Before
Bennett's Story Part 3: Shit? Meet the Fan
Bennett's Story Part 4: The Truth is IN There
Bennett's Story Part 5: Acthar the Terrible
Bennett's Story Part 6: Road to Nowhere?
From the time we got Bennett out of the NICU and home from the hospital until a few months ago, we were golden. From December 2007 through February 2009 his development was just what we sort of expected and hoped that it would be. We knew he was technically around a month ‘behind’, so we have always factored that in, but he caught up for the most part and grew quickly. He was meeting all the milestones that his pediatrician expected, was in the percentiles he was supposed to be in and was doing what infants do.
He was learning to crawl, then walk, learning to pick up food and feed himself, lift himself up, laugh, smile, and anything else you expect from a child while they grow. No real injuries that we can recall, couple of falls but nothing major that required anything more than observing him since he wasn’t seriously hurt.
Heck, Carter had taken more than his fair share of spills and fell down a VERY long flight of stairs once and fell out of the bed a few times with no issues at all.
There is one very important thing to note however…over the winter and into the holidays, I had made some comments to Jen regarding my opinion that something with Bennett seemed a little…off. Nothing major, just some observations of some behavior that I couldn’t quite explain...like walking in a circle, not maintaining eye contact with me much, a lack of interest in TV or toys, and the fact that he seemed to be learning sounds or words more slowly than Carter did.
I didn’t take it THAT seriously; neither did Jen, as some kids do develop at different speeds and have different personalities and interests. Hell I have known of kids who didn’t utter a word at all until they were OVER TWO YEARS OLD. But it did come up in a few conversations, so it is worth making a note of.
But don’t misunderstand that part…Bennett WAS saying words, he was understanding things like his name and responding to it. He was saying ‘No-No’, ‘Baba’ and stuff. He could say words like ‘Dadda’ and ‘Mamma’ though we were not entirely sure if he knew that those were our designations, but hell, he repeated them.
Hell, look at all the photos I am peppering in throughout this writing...he totally was engaged with me while taking them or with whomever he was interacting with in the candid photo, he was responsive, smiling, laughing...super cute, super adorable and he was smart. He would attempt to repeat some things you said, you could see him trying to figure it all out in his head as you presented him with something new. And even though he was less engaged in toys as Carter was, he still played with them.
He just played with them a little differently. And he absolutely engaged with his older brother as much as his easily-annoyed-by-littler-kids older brother would allow.
He was, in pretty much every way imaginable, a happy and joyful well-developing boy.
On February 11, 2009 Bennett had an appointment with his pediatrician for his DTaP immunizations, which he received with very little fuss. He always had shown a massively high pain tolerance, uncanny really. Up to that point he had received every immunization to date that most kids get, with no complications or issues other than a fever, at the appropriate ages they were scheduled to get them.
The following evening, on Thursday, February 12, 2009, Jennifer went to the church for aerobics. I stayed home to watch Carter and Bennett. Bennett was running a slight fever from the DTaP shots he got the day before, but nothing super serious, and I was playing with him on the floor while Carter watched TV.
Everything was exactly how it usually was. I was on the floor, Bennett was doing his thing, and Carter was doing his, and we all just played and laughed and sat together doing what Dads do with their young sons.
Out of the corner of my eye, I noticed a very odd behavior from Bennett, a subtle thing really, a sort of herky-jerky motion in his head and arms, very slight, what I called a ‘body hiccup’. Then he stopped. He walked around a little, made some sounds, then did it again. Then walked around. Then again. The entire experience didn't last very long, and I managed to shoot a little video of it since I always kept the camera at the ready on our charging island. I didn't get a lot on the disc, just a couple of the 'hiccups'.
I explained it to Jennifer when she came home but he wasn’t doing it anymore and had not been doing it for long. In fact at the time I even said that it looked like he had the 'shivers' because of his fever. She saw it a few days later, and it was puzzling to her too, because as quickly as it started up he stopped. Then nothing for a few more days, but then we both started seeing it happening more frequently, and we were both becoming baffled. And concerned. But not worried. Not yet.
Because the damnedest thing is that we were looking shit up on the net like ‘body hiccups’, ‘body stutters’, 'child shivers' and other stuff and didn’t find anything that even once frightened us. Never once when we were describing it to friends or family did we use the word ‘spasm’. And I certainly don't categorize a 15-month old child as an 'infant', so the word 'infantile' was missing from any searching I had conducted.
Hell, even the very first time I even mentioned it in a blog, the VERY first one ever about Bennett and what was to come, I mention in a roundabout way that maybe he was having a seizure or something LIKE that but I had only the DAY before even connected the dots to think to USE the word seizure.
And still, when I wrote that first entry, I had no fucking clue at all what Infantile Spasms actually were.
We would learn very, very soon.