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Lisa’s Blog » Kayla

Posts Tagged ‘Kayla’

Four years ago today

Friday, March 28th, 2008

Today marks four years since Kayla’s aneurysm turned our lives upside down.  It’s so hard to believe that much time has passed already.  In many ways though, it seems like it’s been much longer than just a four year journey.  Goodness knows that Paul and I have probably aged much more than the four years on the calendar from all the stresses and fear this event has introduced into our lives. For those of you who keep in touch with us, you are already up-to-speed on how things are going with Kayla’s progress.  Even so, I wanted to put together an update so that everyone could be “in-the-know” and hopefully say a few extra prayers for Kayla and the rest of us today. 

It’s been a hard week for me, quite honestly.  It always is during this week of every year since Kayla’s been sick.  I reflect upon how things are going and question God’s plan of allowing Kayla to have “special needs”.  I know that things could be much, much worse and so therefore I am thankful.  That doesn’t, however, suddenly make my desire for a full recovery vanish from my thoughts and emotions.  The past few weeks have pretty much told us that perhaps a full recovery is not in the cards.

Before I explain what I mean about the future, let me tell you about how Kayla IS DOING now.  She has had two rounds of botox injections that allow her weaker muscles the opportunity to get a little stronger (at least theoretically).  The botox has worked very well in her foot and leg.  She is walking very well these days and only begins to show signs of toeing in again when the botox begins to wear off.  Her arm and hand do not show much improvement even with the botox.  She has very minimal fine motor skill ability with “rightie”.  She can clamp the muscles down but cannot open them back up again on her own.  She has minimal ability to move her wrist up and down, but without prompting it just doesn’t take place.  Cognitively she seems to be doing quite well—what a miracle!  She is currently being given a psychological exam by the school system in order to decide how things are going from a clinical standpoint.  She is a very happy little girl and is doing very well in kindergarten.  I cannot say enough good things about her teacher, DeeDee Bennett.  She has been great for Kayla and is so easy to work with for Paul and myself.

As for therapy, the school system has informed us that they feel Kayla’s impairment is not affecting her progress in school.  That progress is what determines whether or not she receives therapy through the school system.  We have agreed to allow them to do some developmental testing to have some true clinical data before we all sit back down together and make some pretty important decisions for Kayla’s future therapy and course of action.  Kayla is still receiving private therapy once a week at the hospital here in Statesboro.  I was informed yesterday that if we do not see some notable progress by the end of Kayla’s current plan of care that she would not create another plan for her.  Basically that means that traditional therapy has done all for Kayla that it probably will do to help her recover. 

I have been praying about where we go from here and hope that at least Paul and I will be able to continue to work with her to strengthen her right arm and hand as much as we can.  There is also a research study at Columbia University that we have just applied to be a part of.  I’m not sure if she would be the match they are looking for but we are hopeful she will be.  If accepted, she would go through a 15 day intense constraint therapy regimen in NYC. Then she would return every so often for research observation and follow-up.  We would very much appreciate your prayers that if this is meant to be that everything would just fall into place.  The sessions take place in July so I would not even have to take off any time from work to get her there.  Can you imagine all of us in NYC for half a month?  Yikes!  It would be so worth it though if it would give Kayla a chance to recover a little more fully.

 Thank you all for your continued thoughts and prayers.  We appreciate them more than you know.  Please enjoy the photo montages of both Kayla and Austin.  We went to the beach last Saturday afternoon and had so much fun.  It was a nice respite from the responsibility and the stresses of our everyday life. 

Hug those you love and let them know how special they are.  Don’t take a minute for granted!  I’d love to hear from all of you!

 

Love and prayers,

Lisa