Archives for the month of: August, 2008

Tonight Grace escaped from the house!  Grace was playing in the living room near the door,  Joy was in one room and I was in another on the phone, all of a sudden we heard the storm door shut.  Running into the living room (the whole 6 feet) we find Grace sitting outside the door content as can be.  I can’t believe that she would have been able to reach up and grab the handle so our theory was that the door was not latched.  Either way it gave us a quick scare as Grace was not in our controlled environment.

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Grace has been on a bit on emotional roller coaster lately  The Vigabatrin seems to be have some positive benefits, but has we have attempted to increase the dosages twice she has become unconsolable at times, and recently we have been seeing some increased seizure activity.  We are dropping the dosage back to 250mg once a day the starting dosage and going to run with that for a while, most likely until we see Dr. Doescher in September.

It used to be that I only knew one other Joy — Christy’s mom.  Lately I find myself with two other Joy’s.  Joy R. from North Carolina is the joy of my work life.  She has helped me to provide focus and confidence to what we are doing.  Joy N. is the joy of my home life.  Joy N. wrote a book called Involuntary Joy.  It is all about how she changed after the birth of her son Strauss.  It’s about the thoughts she never though she’d have, the dreams she didn’t know she had, and about being surprised if you are able to look at the bigger picture.  It’s a fantastic book I highly recommend it.  She also has provided me with focus and confidence to what Kevin and I are doing.  I was thinking about Joy N. when I was driving home last night.  I was listening to the radio and they were talking about what signifies a catastrophe.  That’s when I heard the term involuntary transparency.  It happens when you become totally reliant on the expertise of others…. or that’s what the guy on the radio believed.  It makes sense to me – it was not our choice to need all the people who have come into our lives to help with Grace’s life.  But it sure does leave us feeling vulnerable – (me I guess, I shouldn’t talk for Kevin).  That it is one of the qualifiers of catastrophe I can understand.  But for me it was more about reminding me that there is a choice.  The more open we are about Grace, what she experiences, what we want for her, the better off we’ll be.  It was only involuntary transparency at first.

I find myself often checking in on “kids” we’ve met in the hospital or come to know with epilepsy.  Not a day goes by where I don’t get an email from someone’s Caring Bridge sight telling me an update has been made.  I look forward to these updates – I grieve, celebrate, laugh, cry, right along with the parents of these “kids.”  (I only put kids in quotes because I’m sure Katelyn would not appreciate me calling her a kid).  Today was a good day — I cried happy tears over a movie that Ryan’s mom had made for him – showing his journey and what he’s been through and celebrating who he is, and how special he is.  I also got to hear a phone message from Kevin, with Grace giggling into the phone.  Made me want to leave Minnesota instantly so I could be home – with her- where I ultimately belong.

We plan to try a higher dose of vigabitrin this weekend — we are giving it another try – to see if her body will respond to the higher dose without the crying, screaming, and unhappiness Grace experienced last week.  Please add us to your prayers, think good thoughts, cross your fingers…… whatever you got!

 

Ode to Julie:  Julie — I don’t know how to begin to tell you about Julie–  Julie has become integral in our lives – Julie is someone who has loved Grace, Kevin and I to the fullest – she’s so flexible, giving of her time, and just understands.  We call on Julie and cancel on her at the drop of a hat – and she continues to love us.  What an incredible gift.  Thank you Julie.  Joy