Archives for the month of: September, 2008

If you were to visit our church on a Sunday morning, all the young kids running around have stickers on their backs.  Parents also have a sticker —  the parent sticker is just a number (that matches the number on the kid sticker).  I always looked at them – and longed for Grace and  us to have that experience.  (Kind of strange – I know.)    Until yesterday though we’d never left Grace in the nursery.  In reality it all came together much more smoothly then I ever could have hoped.  A meeting with the coordinators and a parish nurse.  Grace, completely charming in the middle of the circle.  Then a few volunteers, each willing to be with Grace in the nursery so that Kevin and I can attend church together.  And finally a beeper, to know that they can get us – should they have any questions and need us -but never having to leave Grace’s side.  How will we ever thank them?  Do you think that they have any idea how grateful we are?  We got our first set of stickers yesterday….us….. the people who don’t seem to do anything else the same as everyone else.  We got a picture of Grace’s sticker on her back when we got home yesterday.  She got ahold of mine during Sunday school – otherwise I think I would have photographed them both — together.


We have continued Grace on the Vigabatrin, by now the plan was to have her at a dosage of 750mg twice a day, we are still at 250mg once a day.  Grace does everything at her own pace so it’s not too big of a surprise that we are still at the original dosage.

The vigabatrin has brought new life to Grace, she is smiling on a regular basis and giggles at times (we have yet to figure out what exactly makes her giggle) she is also more active and more deliberate in her playing.  However it has also brought more seizures that are longer but lighter in intensity.  We have had to use Diastat (emergency seizure medication) more in the past month than we have in the last year.

So our delimia is at what cost in Grace’s development do we allow more seizures or compromise her development for better seizure control.