Bunn’s Prairie

I haven’t posted this yet despite the fact that this happened a couple of weeks ago.  They’ve stopped giving Kaley active OT/PT and Speech.  The therapy industry code of conduct dictates that patients must be making demonstrable progress otherwise therapies must be stopped.  This is to help prevent fraud which was evidently a large problem in this industry in the 80s.  What they told us, and what we had observed as well, is that Kaley has not made any improvements in several weeks.  In fact she has regressed in that time.  Instead they will be doing passive therapy 3 times a week (along with training me on how to do this as well).  If Kaley shows signs of improvement then they will pick her up again right away.

Our efforts to encourage Kaley’s improvements have included increase the dose of provigil to try to get Kaley to be more awake and play around with what times she receives it (as we have seen her stay awake all night before and sleep during the day).  Also we are adding a muscle relaxant which will hopefully make the muscles in her legs and arms relax.  Her Neurologist says that keeping her muscles tense all the time (even if it’s not a conscious action) still takes a lot of energy.  Therefore if we can relax these muscles she can spend her energy on better things.  The down side of this drug is that it causes sleepiness!  So far was have seen improvement in her legs and a little in her right arm.  We’re going to increase the dose in the next couple of weeks to see if that continues the progress. 

Kaley was more awake yesterday when I visited her.  When I asked her questions she was making more exaggerated movement with her head shaking and nodding.  Thanks Kaley!  That makes it much easier to tell what she’s is saying.  I was going to sing some Christmas carols with her and found her Christmas Mouse action figure that sings “Santa Claus is Coming to Town” when you squeeze his foot.  We always chuckled at him (and at how Toni our cat would be fascinated by him).  When I showed it to her, she immediately smiled and then started laughing!  Not her normal giggle that we all know, but more like a deep belly laugh.  She did that for about 5 - 8 seconds.  It was wonderful to hear her laugh again.

Kaley had a group of friends from Colonial’s church choir stop by on Saturday to sing Christmas carols for her.  I had fun singing along too.  Unfortunately Kaley was pretty sleep while they were there.  We started a drug that was supposed to help Kaley stay awake during the day, but it doesn’t appear to be doing what we had hoped.  We’ve noticed she still sleeps a lot, and sometimes she can’t fall asleep at night (then she sleeps all day the next day!).  Obviously we’ve got some timing and dosing issues to work out.  Or perhaps this specific drug isn’t the one for us.  We’ll have to wait and see.

As today is Kaley and my 2nd anniversary, I thought I would post our wedding vows:

 I choose you, Kaley, to be my wife, as my friend and love. On this day I affirm the relationship we have enjoyed, looking to the future and to keep and strengthen it. I will be yours in plenty and in want, in failure and in triumph. Together, we will dream, and live as one while respecting one another, we will stumble but restore each other, and we will share all things. From this day forward, I will be proud to be your husband and your best friend.

I choose you, Andy, to be my husband, as my friend and love.  On this day I affirm the relationship we have enjoyed, looking to the future and to keep and strengthen it.   I will be yours in plenty and in want, in failure and in triumph.  Together, we will dream, and live as one while respecting one another, we will stumble but restore each other, and we will share all things.  From this day forward, I will be proud to be your wife and your best friend.

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I offer you this ring as a symbol of my enduring love. I ask that you take it and wear it so that all may know you are touched by my love.

I am back from sunny Florida, actually I returned on Sunday, but have been trying to catch up on stuff.

We are starting Kaley on a new med that will hopefully keep her awake more throughout the day (and therefore allow her to participate more during therapy). She got her first dose yesterday. It is supposd to take a few days to (and some playing around with the size of the dose) before we expect to see if it’s having any effect.