Preparing For Another Surgery

Belated Merry Christmas!  I know it's been awhile since I last posted, and alot has happened since then.  Upon our return from Disney World, my husband and I sold our house and bought a new one!  Needless to say this was stressful and time consuming...but we are excited to make the big move to just outside our city limits.  Stephanie will be getting a much bigger room finally and no stairs!  Unfortunately, just after accepting an offer on our house, with a possession date of February 1, 2013, Stephanie's  Neurologist confirmed that we would be moving ahead with her second brain surgery, Corpus Callsotomy.  The kicker was that the date is set for January 29th!

Luckily we were able to find a great home and will move for January 19th, giving us a few days to get settled before the big surgery.  The previous surgery was a big risk and we thought it would help Stephanie get some of the relief she needed from all her seizures.  This was not the case and she continues to suffer from numerous daily seizures.  Now we are faced with completing the separation of the two hemispheres of her brain.  A recent MRI showed some tissue still connected in the anterior part of the brain and the 1/3 that was left intact in the posterior part of the brain.  The surgeon will sever the remaining fibres of callosum and the two hemispheres of her brain will be completely separated.  This in itself may cause some additional post physiotherapy issues between the two halves of her body and how she functions.  There is risk of her losing her speech ability as well, which was our main reason for only severing 2/3 of the callosum during the first surgery.  But now we feel that we have to try everything we can  in order to help her get some relief and hopefully slow down any damage the seizures are causing.  We've come this far, we have to keep going for her sake.

It is still the worst feeling in the world to have to make this decision to put my child in harms way in hopes of saving her in the future. Would all parents do this? No, I don't think so. Some would advocate further medications.  Some would advocate the Ketogenic Diet, etc. etc.  Stephanie isn't herself in this condition.  She is so heavily medicated right now in preparation for her surgery that she can barely function without wanting to lay down and sleep.  In preparation for this surgery, we again have to first determine if her intracrainial pressure is low enough for the surgeon to be comfortable opening her up.  This means heavier doses of medication and a lumbar puncture the week before surgery to determine if she is indeed eligible...same procedure we followed this last year.  The first time around in April, 2012 her pressure was too high and the surgery was cancelled.  We pushed to try the medication trials again and sure enough her pressure was low enough to have the surgery in July. 

Let's cross our fingers that Stephanie's body will cooperate and will be healthy enough for another brain surgery.  She needs this. We need this.
 

What a WISH!

Home sweet home! It's bittersweet to say that because Stephanie, my sister and I had such a wonderful time during our trip to Disney World that we would almost prefer to stay there! It's great to be back and be able to share the wonderful memories that we made.  Give Kids the World Village was an amazing carefree place to be with your family.  Breakfast, lunch, & dinner was served or delivered every day and tasted like home cooked meals made with love.  The evenings were filled with events and activities such as Halloween on Mondays, Christmas on Thursdays, and bbq pool party on Saturdays!  Stephanie received a gift delivered to our villa each and every day we were there.

As for the theme parks, we had such a blast and I couldn't have asked for Stephanie to be more cooperative and happy.  We lugged her around everywhere and she loved it all!  Let's see, we met and got pictures with Cinderella, Aurora, Rapunzel, Belle, Mickey, Minnie, Goofy, Pluto, Lion King's Rafiki, Woody and Jessie from Toy Story, Baloo, Dora, Diego, Boots, Patrick from SpongeBob, Green Goblin from Spiderman, Tinkerbell, her new sister, Curious George, Cruella DeVille, Woody Woodpecker, Chip and Dale chipmunks, sea lions, stingrays, dolphins, alligators, snakes and you name it!!!

There were a few teary moments...happy ones...for me and my sister.  The look on Stephanie's face when she met some of the characters and how wonderfully they treated her made this whole trip priceless.  I think along with meeting Cinderellla, Stephanie's most enjoyable moment was feeding and playing with the dolphins.

I don't think I will be able to come up with a thank you letter to Make-A-Wish and Give Kids The World that will adequately sum up how we feel about what they have done for Stephanie and our family.  These memories will last a lifetime.  I took hundreds of pics and some fantastic videos, some of which are posted in the Make-A-Wish page link on the right.

Now if only I can find a way to get Stephanie to understand that every time we get in the car we are NOT headed for Disney World!!!

Toodles!

Today is the day!!!

We are busy packing last minute items and are extremely excited to depart on our Make-A-Wish adventure to meet Cinderella, Belle and Sleeping Beauty in Walt Disney World, Florida!

Stephanie woke up this morning and was more than pleasantly surprised to hear that today is the day!!!

Time for Stephanie, Karen and I to put on our Make-A-Wish tshirts and get this vacation started!

I will be sure to post pictures and updates soon...

Sent from my iPhone

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!"...

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!