Archives for the month of: April, 2011

Today Grace had her big recital at Dance Without Limits hosted by the Des Moines Ballet & the School of Classical Dance & Ballet in West Des Moines.

 

Grace did a great job and had her own cheering section!

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We are home after a busy weekend.  On Friday night we took Grace to Wesley Woods and were able to ride outside for a change.  Grace really enjoyed her time riding Sterling and was chatting up a storm.  Grace was sitting up better that usual really using her muscles.  Our friend Jessica went with us to observe for one of her classes at Grandview.  We of course stuck with tradition and stopped by Rock Power Pizza on the way home.

On Saturday we house swapped with Joy’s parents.  Grace stayed home and was snuggled, spoiled, and pampered while Joy and I traveled to Oelwein for a family wedding.

On Sunday Joy and I came home to take Grace to her last ballet practice at Dance Without Limits before the big recital.  Grace did very well again, we had the same big ballerinas assisting her as we did last week.  Grace has been showing a lot of interest in her ballet classes and is ready to go into the studio as soon as we get there.   She is also letting the big ballerinas move her in ways that she would not normally care for.  She is watching the other ballerinas, it has been a really good opportunity for her to participate in a group activity.

After ballet we took off for St. Paul for an appointment on Monday with the Epileptologist.  These appointments start out with an EEG where the electrodes have to be glued to Grace’s head.  Since Grace is very defensive of anything concerning her head it is not her favorite thing to do.  Grace has been becoming more and more alert and more vocal over the past months so it was no surprise that she was not very happy.  It takes about 45 minutes to get all the wires hooked up before the hour long recording starts.  I attempted to entertain her with my phone as she really enjoys lights and glow off of screens…this time that didn’t even work but usually does.

Then I remembered that I recorded part of the ballet practice yesterday. As soon as Grace heard the performance song (Send it On – Disney Friends for Change/Miley Cyrus) she immediately stopped crying and we probably watched it ten times eyes wide open glued to the screen (while the tech continued to glue electrodes to her head) and no more tears (except for Joy’s).

At that moment we both knew that Grace will be in Dance Without Limits for the long-term.  While Grace can’t verbally tell us she likes ballet her actions today do.

Our appointment with the Epileptologist went well, we followed up on a a recent medication increase and will be increasing another in the coming week.  There are no new medication options coming out in the immediate future, we talked about our next options which will most likely be another course of steroids or a Vagus Nerve Stimulator (VNS).  We also discussed Grace’s diet and we may start looking at moving Grace from the Ketogenic Diet to a Modified Atkins (for seizure control not weight loss), but these changes will not occur until after our next appointment in October.

Stopped by Von Hanson’s to stockpile on double smoked bacon for the summer and did some serious clothes shopping for Grace who is now well equipped for summer as well.

All in all 900 or so miles, three roundtrips, an outside horse ride, a wedding, ballet practice, doctor appointment, shopping, and I turned a year older.  I’m beat, time for bed!

kevin