Side affects and the toil seizures take on Quinn's body

I was going through my phone this afternoon deleting some pictures since I had over 1000 pictures on my poor cell phone.  I came across some pictures of Quinn from this spring/summer and my heart is heavy. You don't realize how much your little boy has changed and the toil seizures have taken on his little body until you look back at the pictures. Tears filled my eyes and still do writing this post. Our little handsome man has gone through so much and his poor body has also.

Here is are a few pictures of Quinn from this Spring/Summer

 

 

And these other photos are from the last few weeks

 

 

 

This little man is a fighter and trooper. His body has been put through thousands of seizures and loads of medications. Quinn is seizing hundreds of times a day.  We need a cure/treatment for this cruel disease. We will keep fighting to our handsome, loving, wonderful, charming little boy.

The essay for the contest that we didn't win

LGS changes lives. We have discovered an learned this on our journey.  We have learned we have no control of when or where seizures will happen. There is never a convenient time for a seizure. Our lives changed in the blink of an eye. We were blessed with a beautiful healthy boy in Jan of 2009. He developed normally an there was never any health concerns.  This all changed on March 24 2012 in the afternoon. It started with one seizure in which he stopped breathing an then progressed into 50 seizures a day and now he is suffering from hundreds of seizures a day. He now is covered in cuts/bruises an struggles with his walking an balance. He also is now using a wheelchair because of his balance an amount of seizures. LGS is devastating.  Life isn't fair as we have now come to know. Having to watch your child suffer through seizures an as a parent you can just watch an comfort them is the hardest part. Not being able to take their seizures away an make them better is frustrating. 
We have now accepted we can't take their seizures away but we can fight for them an never give up hope for a cure/treatment that works or a miracle. 
We beg with God to take their place, that we could take their pain an suffering.  We plead for a cure an pray for seizures to stop.
Our special little boy has taught us so much. He always has a smile on his face even after a seizure that smile comes back. He is a trooper,  he is a fighter an he has so much strength. He has so much passion for life, he doesn't let seizures slow him down, he doesn't complain an he always lights a room up with his smile an big blue eyes which always get all the ladies. 
We could all learn so much from our special children. 
We have found strength we didn't know we had an endured more then we could have ever imagined. We have learned strength, endurance, courage an love through our journey. We take life day by day, moment by moment an minute by minute. Life is unpredictable, life is precious.
Our situations an life is not what we planned. We all had a plan before our special children. It didn't include having to watch your child suffer through seizures an having to fight for everything for this child to find an get a cure. Having to try medication after medication hoping for something to control the seizures. We were given this special child for a reason an that reason we may not know. But we do know we will do everything in our power to fight for our precious children with LGS an other Epilepsy syndromes. This special child will be our inspiration,  passion, strength an love of our life. Sure we may grumble, complain an have horrible days but we will always do what is best for this child because of that love we have for them.
We will continue to search, seek, look an hunt for a cure. We will raise awareness, educate an teach people about LGS an seizure disorders.
There will be tears, anger, exhaustion an not knowing if we can carry on another day but we will because we are parents looking for a cure for this precious child we love.

 

New chapter in life

Its been a long time since my last post ! There has been some changes since Dec. We moved back home to Alberta in Jan of this year. We made this choice to be closer to Dr's and family.
At Quinn's last appointment about a month ago we found out he is actually having 15-20 seizures an HOUR.  We still aren't having any success with medications and treatment to control these seizures.  Quinn recently started a Pre K program at school for special needs children. He is loving school and thankfully has an amazing aide who has seizure experience and takes great care of him. It was so hard to make the choice to send him to school and be away from us for a few hours a day, but Quinn really needed the socialization and we don't want to hold him back in life.  Quinn's balance has gotten worse so he has a lot more falls and accidents.  He does have a wheelchair now for school to get him to and from the van to the classroom for safety reasons. He loves to play with the brakes as I am trying to drive him to class. He still has that love for life and love for being outside. He always has a smile on his face and those big blue eyes get ya every time.