Saturday, January 5, 2013

How did we not know?

Allie was ridiculously adorable today.  Here is a 1.5 minute long video of absolutely nothing in particular, except Allie finding a toy apple.  It is great how mobile and verbal she is!


video


While I was importing this video onto my computer, I started rewatching videos of Allie when she was younger.  I was watching a video that I had posted on the blog back in December 2011 (here is the post) and it was like being kicked in the gut.  At the 25 second mark, there was an infantile spasm.  This was a full 5 weeks before we thought we saw the first spasm.  Five weeks.  That is a really long time to have your daughter seizing in front of you and you not to notice.

Jonathan and I were sitting there staring at her and we missed it.  I have watched this exact video dozens of time and never saw it.  I always thought it was an outrageously cute video.  How did we not notice?

It's kind of like how we first noticed that Allie wasn't using her right hand as much as her left when she was about 4 months old but (with the help of an overly encouraging doctor) put off being pushy for another 3 months.  Three months.  How do you just sit there and say, "Gee, my kid isn't really using half of her body.  She must just be a 'strong lefty' (her pediatrician's words at Allie's 5 month checkup when we told her that Allie seems to be preferring her left hand)."

In the case of the whole stroke/cerebral palsy diagnosis, I think that I knew something wasn't right but I was also acutely aware that first time mothers think everything is unusual.  My philosophy was that most kids are fine so Allie must be too.  It pains me to think of all the therapy we could have gotten in during those three months.

Some good news: we can now say definitely that the constraint therapy did not cause the seizures, which is something that her therapists were worried about but we never gave much credit to.  The first time we saw a spasm was about a week into the constraint therapy.

It is awful how a year old video can make the seizure turmoil feel so fresh again.

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