Thursday, May 31, 2012

Things you want to ask about but don't...

Will had his second Botox injections today.  The first were back in November, and Will did really well.  We saw a minor improvement in his leg muscle spasticity afterwards.  Botox injections typically last 3-6 months.  We have been noticing over the past month or so that it has been getting increasingly difficult to diaper Will or bend his legs when he's stressed. It was time to give his legs some relief again.

So we went today.  As with the last time, Will did amazingly well for receiving 4 deep muscle shots - two in his inner thighs and two in his hamstrings (back of thighs).  He never cried because he was scared or in pain - he cried and protested fervently when the doctors and nurses held his legs and arms completely still.  Once the shots were done and they released him, the tears and protests stopped.  Instantaneously.   Touche, Will.

For 4 glorious weeks after the Big One at Hopkins, Will was seizure-free.  He slept peacefully and woke up incredibly happy.  We knew the Next One was right around the corner, but would not speak of it!  You know how we feel about jinxing things that way.  But I have been holding off blogging about it, and I know that people have been holding off asking about seizure activity.

Unfortunately, Will has had three seizures in the past 10 days.  We've worked out a plan with his neurologist, and will be increasing one of his drugs and adding a new one in conjunction.  It is frustrating to be back to this point. 

Two of the seizures have been pretty typical.  One of the seizures was really abnormal - it occurred in the morning after Will woke up (like Hopkins) and affected more of his face than seizures normally do.  We gave him his seizure medication (while trying to remain calm as to not alarm Luke and Will who were awake and nearby) and waited.  It seemed to be taking a long time.  Nate got ready to take Will to the hospital.  At one point, we thought we needed emergency assistance at home and we called 9-1-1.  Within a minute of being on the phone with 9-1-1, the seizure stopped in an instant.  Thankfully the ambulance didn't have to come, and after Will slept off the Diastat, he was doing ok.

From the outside looking in, it probably looks like things just returned to typical around here.  You'd probably be right.  Those quiet recovery weeks post-Hopkins were necessary and appreciated, but totally abnormal.  Where would we Slaviks Outnumbered be without a perpetually elevated level of worry?

No comments: