Archives for the month of: June, 2008

We returned home last night from our weekend in St. Paul.  It was a grueling weekend in a lot of ways.  However, the good parts were really good.  We had Davanni’s pizza, got to sleep in a sleep number bed, saw some of Kevin’s APO friends, and got to visit with Grace’s first OT – who has been such a wonderful to support to Kevin and myself.

In St. Paul Kevin and I noticed a lot more people asking about why we were feeding Grace through a tube, why we weren’t feeding her the food on our plates– more looks of confusion…. that I interpreted as “I wonder what’s wrong with her?”.  In Des Moines we haven’t yet been asked those questions…….The St. Paul people also commented about her beautiful hair – and how she looks like a doll.–  Maybe those people were Iowans?:)

Dr. Doescher is concerned that Grace’s seizures are happening as often as they are and he believes we have maxed out the current meds and the diet.  We will stay on the diet and the current meds because they have made a difference.  He would like us to consider adding a med that is not currently approved by the FDA.  He also mentioned a surgical procedure as an option for Grace.  Kevin and I were truly blown away.  Our time frame is short – the med we can get in 2-3 weeks.  If it doesn’t work in a month then surgery this fall – as early as September- is his second option.  I cannot comprehend this – it makes my stomach churn.  I only tell you to let you know that this decision lies in front of us…. without all the facts and time to process what we’ve learned it is difficult to tell you more.

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Kevin, Grace, and I are on our way to St.Paul- we’ll spend the weekend there and then meet with Dr. Doescher (Grace’s epileptologist) on Monday morning.  We stopped for lunch at one of Kevin’s favorite sandwich shops from his time at Iowa State.  It was crowded inside so we went outside to sit down.  She was already out there– talking loudly- sounding young, and like a college student.  Then all of a sudden she switched gears and began talking about med school.  She thought “be nice to your patient class” was dumb, boring– she talked about her upcoming rotations and how easy they were going to be… not so much studying–it was so abstract.  As she talked I was feeding Grace through the g-tube…Kevin ran in and out of the restaurant rinsing things out for me.  Did she seriously not notice we were there?

Kevin, Grace, and I left – but I told Kevin I needed to go back.  As nicely as I could I wished her luck on her rotations, told her that i hoped she would learn a lot, and that she would take “be nice to your patient class” seriously.  I reminded her that she would be working with people and their families – that this work she’d be doing was personal… or that “personal” part is what I meant to say.  She apologized for upsetting me…  I asked her just to remember that she’s working with people.  I was shaking inside– where was all this coming from?

Back at the car I rode quietly until at one point Kevin asked me “Are you ok?”  I just couldn’t believe I had done that.  I’d done it nicely….but normally I would have just shook my head and walked away- never daring to say something.

But because of Grace – there is a new standard.  Someday that woman could be the doctor caring for my child–and why would I not take an opportunity to shape her?  and is it really that or did she just tick me off?  The more I’ve thought about it, I’ve come to this conclusion–she did tick me off – but no longer is it ok to just walk away without trying to positively affect the situation –I said something because I’m Grace’s mom.