Archives for the month of: September, 2009

Kevin and I had a full weekend.  Friday and Saturday we attended a “Parents as Presenters” class (preparing us to talk about Grace, being her parents, and our family).  Friday and Saturday Kevin helped with the set up and tear down of the Epilepsy Conference.  Sunday we went to church – 3 year old Sunday School and then dropped Grace off with Julie and Jessica and went to see Wicked.

All in all the Parents as Presenters course was good.  Exhausting.  We re-lived so much.  Putting words to what we experienced in the past – and recognizing out loud that we are different every day just drains you.  I was really struck on Sunday by one of the songs in Wicked – the title of this entry – Defying Gravity.  I got to thinking that defying gravity with Grace is what we are doing.  Perhaps its a rough analogy but hang with me.

The epilepsy  is the gravity part.  The thing that will always be there.  Unlike gravity I don’t even think that a trip to moon would allow us to escape it.  Every new skill she learns – every step she takes- we are in a way defying epilepsy.   So we’ll keep at it.

Grace is doing her part – walking about – doing well at school – learning – trying new things.  Kevin and I are working on our part too. (The picture is Grace and Kevin on their way for labs this morning around 6 am).  We are trying another new medication.  It will take awhile to get to the dose Grace needs to be on.

Defying Gravity – I can’t help but think that Grace truly is amazing.

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Grace has been so tired today – finally now at 7:45 pm she is showing some gusto – playing, walking, kissing Hoover…..  When she’s so tired I always wonder – should I push her? or just let her sleep?  She has a pretty big week coming up so today we went for the low key approach.  Tomorrow is her first day of Sunday School, Monday is the first day of preschool.  She really wowed her teachers with her walking when we went to open house on Friday.  I think they’ll see other progress as well.  I know I’m partial but we are making progress in other areas.  It seems silly, but it always helps when other people notice it too.

She’s starting to slow down – time for a tubby and bed.  Think good thoughts about the week ahead!

Joy

Grace heads back to school next week, we filled out a ton of paperwork today.  One document prohibits me from swearing on while on school grounds…I didn’t even know that I had a problem!

We are about half way through the first half of September.  One trip down for Joy and bypass surgery for Grandpa was a success.  The next week and a half bring out of town trips for both Joy and I, fortunately not at the same time.  Joy went to Michigan to visit Grace’s newest cousin Eli, at one month old he is already able to tune his own guitar.

Grace started a new medication on Friday night.  Vimpat is the medication, it will take 8 weeks to get up to the desired level.  So far so good, and we have seen a slight reduction in seizures in the morning.  We’ll see if this continues or if it’s just the honeymoon effect again.

kevin