Thursday 18 October 2012

Disney World Countdown!

Time is going by quickly now and we are just over 3 weeks away from our Make-A-Wish trip to meet the Disney Princesses at Disney World.  I am sure that Cinderella, Belle and Sleeping Beauty's Aurora are just as anxious as we are to meet!  I finally submitted Stephanie's passport application and we should get her new passport by the end of this month. 

To celebrate our upcoming trip, Stephanie had a great visit with Make-A-Wish staff last night and received many wonderful gifts! She was smiling ear to ear when she pulled out a new stuffed Miss Piggy doll!  And that wasn't all...there were so many wonderful things that I took pictures and posted them along with comments on the page to the right under Make-A-Wish.

We are very excited for this wonderful opportunity and Stephanie's language has increased significantly now that she is talking about all things Disney!!

As Mickey Mouse would say, "Toodles!"...

Monday 8 October 2012

More Surgery?

It's been awhile since I've last updated on Stephanie and how she has been managing since her return home from the hospital at the end of August.  She's recovered well and began the new school year with the rest of the students.  Recently we met with the neurologist and the neurosurgeon to discuss the outcome of the surgery and Stephanie's seizure activity.

After discharge from hospital, her seizures were much shorter and she was only experiencing one or two a day.  Sadly, I have to report that her drop seizures (atonic & tonic) have increased again to the numbers that she was experiencing before surgery.  Stephanie is having upwards of 8-10 seizures most days.  Some are much shorter than she used to have, some are just as long as before, but the main point is that if we weren't so diligent about hanging onto her transfer belt at all times, she would still be falling and injuring herself daily.  There have been a few occasions in the last week or two that we didn't catch her and she literally crashes to the floor without warning.

After meeting with the neurologist and surgeon, it is most likely that Stephanie will need the second surgery to severe the remaining portion of the two halves of her brain.  An MRI is scheduled for October 30th to determine how much was already seperated during the last surgery (should have been about 2/3rds).  Sometimes the surgeon actually only seperates less or maybe even more.  If he's already seperated as much as he could than we may have to move on to the Vagus Nerve Stimulator implant.  But first things first. The MRI will tell us if there is more to be seperated.  If so, the surgeon usually doesn't perform a second surgery until at least 6 months have passed to ensure that the surgery is necessary.  This puts us at about January.  In the meantime, we are increasing her seizure medicine, Keppra, to see if it will help with the seizures. So far nothing  has changed.

As for our trip to Disney World, 5 weeks and counting!  The Wish Granting Manager from Alberta will be in Winnipeg next week and will be dropping by to meet us.  We are so very grateful for all they are doing and Stephanie is soo excited to be able to go to Disney World.  We've been told she will be able to personally meet Cinderella, Belle and Sleeping Beauty as part of her special wish!