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.

Day by day

How does a person not get frustrated an sad when they have to watch their little boy suffer with seizures all day long and continually get hurt over and over ? When medications fail to control his seizures, when Dr's just raise their shoulders and say we don't know.... When this has been going on for 9.5 months and your little boy has only gone 6 days with no seizures out of them 9.5 months. When your little boy is now occurring brain damage because of all his seizures, but we aren't sure of all the damage yet. Having to watch your child choke on food because eating which we all take for granted if made more difficult by seizures . Quinn chokes a lot on his food because he goes into a absence seizure or drop seizure while eating. When a person has to beg for drug coverage for your little child because the province and insurance don't want to cover the cost, but abortions are covered by health care. As parents making sacrifice after sacrifice for your child and your family trying to do what you think is best for everyone. As a mother trying not to feel guilt for not being able to protect and make your child feel better and also in the back of your mind always feeling guilty that maybe I did something wrong when I was pregnant or when he was little that caused this cruel disease.
We all face challenges in life... I just don't understand why some challenges are just so much more challenging. Sometimes I wonder if its because my children are the world to me and the most precious to me.  Maybe its to learn how to be self less, learn humility, learn grate fullness, learn compassion, and learn to love no matter what. To teach that things/stuff don't really matter in life, health is what is craved and longed for and in the end all that matters is family and love.  Something I have also learned through this all is in the end what really matters ??  Not redecorating your house, debating where to go for your next vacation, planning your next party or event, worrying about what OTHER people think of you and your life. I still struggle with most of these things in my life though. Not that I have a chance to do most of them :) I have lost a lot of friends ( not that I had a lot in the beginning haha ), I guess lost may not be exactly the right term but people get sick of hearing about Quinn, nothing ever really changes in my life it is always about Quinn and the next drug, seizures and more seizures. So the phone calls have lessened and almost stopped, I sometimes wonder why I have a phone then I remember yes to call 911 if needed and text the few people in my life :) It is also hard myself to be friends with people with healthy children. It is so hard to relate to them and I end up jealous of their healthy children and easier life. I wish I had the problems they complain about.
So I guess I still don't know how to answer my questions I asked :) Hence taking it day by day and realizing that there are some people out there that do care, some that show they care more and others weren't meant to be in our lives.

Some of the sad side affects of medications...

I have been thinking of writing this post for just over a week but lack of time and words to express myself have been preventing it from happening.
The past several weeks Q's aggression, temper, compulsiveness and obsession has become worse then it was before. This is really hard to talk about as he is my sweet little boy and it hurts to say bad things about him but awareness needs to be made. Also I know under that all is my little Q and it makes me so sad to see my little boy suffer.
Just so you all know we have been trying to get Q into a Child Psychiatric Dr for months because of his behavior which has just intensified. Finally last week I got all the forms to fill out for Quinn (about 16 papers) and then we still need to wait months for an appointment. It hurts me to know all the children needing help for their well being and others well being and our system is failing them all. Then we wonder why why why does a child/young adult go to extreme measures like a school shooting/ murder suicide and etc. I am in no way saying their behavior is acceptable so please don't think that. It just hurts me to know all these children needed help and we aren't providing the mental help needed.  It is time to open our eyes and see that these children are crying out for help and they ( most of the time) aren't mentally well and can't control their actions to a certain extent.
We have had to hide our knives and sharp objects this month in our home after several incidents with Q. One involved a cat and him having a butcher knife to the cat's neck I managed to get the knife away and the cat was unharmed. This is extremely hard to me to talk about to the public world as it makes me very sad for my little boy and I know it also horrifies people. This is just one incident out of several. Q's sleeping patterns are also very disturbed these last few weeks. He doesn't rest well at all and the other night was up from 11pm-5am yelling,screaming and twitching. The best way to describe the way he was is like an addict on a high or coming off a high.... I could not control him or calm him down. The girls end up waking up and also being up all night because of the noise. It is so sad to see my little boy go through something so awful and I can't help him or take away what is bothering him. He also daily throws his food/drinks across the home resulting in a huge mess. The littlest thing will set him off and he will have total temper meltdown. It could be the cereal not sitting right on his spoon or the cup is in the wrong spot. This makes it very difficult to keep up with housework as I am just continually cleaning up after Q. He also becomes physical with myself with everything from biting to punching. I just Thank God he is only 40lbs and not quite 4 years old because I don't know what I would do if he was bigger and older.
Bottom line is Q needs help... mental help and we don't know how much damage the seizures have caused to his brain ( which could be causing some of this) or if the medications are causing the issues. The only thing that keeps me going is knowing he is still my little man and he does still have some sweet loving moments.
My plea is ... please don't judge people with mental health problems or seem to be acting out ( and blaming it on bad parenting/etc ( some cases it may be) ). These children and adults aren't well and we need to accept that and find help for them. We need more resources available and more public awareness. People shouldn't feel ashamed about mental health problems and other shouldn't think they just need to suck it up or in some extreme cases believing it is a sin and people should just be able to get over it.
I LOVE my little man so much and wouldn't trade him for anything :)

Unknown hazards of drop seizures

Drop seizures..... they happen anytime, anywhere, no warning... I wish for this reason I could build a home fit for Quinn. A home that is built for a little boy who will only get hurt more as he gets taller and bigger. 
Most people don't even know all the common hazards for Quinn with his drop seizures. Here are some examples of things/items that can hurt Quinn.
-Forks
-Pencils/pencil crayons
-anything sharp or with a blunt edge that could puncture when he has a drop seizure
-Water ( when he has a bath we have to hold him because if he has a drop in the tub ( which he has) he goes under the water an sucks the water into his lungs).
He also chokes on his food when he has a drop seizure and he is eating. There is so much more to this horrible disease he has that people don't think of.
I truly wish I had a bubble of some sort to put him in. He doesn't understand why he can't do some things or needs to wear a helmet. We have be fighting with him to wear his helmet all the time lately because he says NO mom I don't have seizure. Then of course he does and gets hurt all over again.
Quinn is constantly hurting his legs,arms and body as when he has a drop seizure he just falls on whatever and where ever. So he just goes limp, falls and hurts his legs and arms because of falling in weird positions. He is covered in bruises all over his little body from falls.
It is so frustrating to hear all the Dr's say... well we don't know why this happens or what to do to control the seizures because everything that has been done doesn't help.
Last night we made a trip to emergency because he had a drop seizure into the corner of a filing cabinet in the house. He was bleeding a lot and we decided to bring him in because we figured it would need stitches. The Dr decided no to stitches because the laceration was to close to his eye and it had stopped bleeding. So they bandaged him up and we headed home. This is a typical day in our lives and his poor sisters have had to adjust as well. They know the drill and know what to do.... last night Brooke ran to get me a cloth that she has made wet in the water for Quinn's cut without me even asking. But this also weighs on them and they get so frustrated with how Quinn gets all the attention.
Here is praying for a good week free from emergency visits and that Quinn's little angels worked extra hard this week to protect him :) ps ... they do a pretty darn good job in my opinion

Our obession with *stuff*

This morning I posted a comment on a facebook page where people were talking about how the parking lots at Walmart and other stores were FULL for Canadian Black Friday sales.  My comment was " I can't believe how greedy people are with things, maybe we should all be sent to a 3rd world country and see if that would change society ways of thinking"
WOWZERS did I ever get thrown under the bus on this page... The negative comments just started pouring in on my post. Now I am not saying I am ANY better then these people. I'm not I am just obsessed with stuff as much as other people. So next time I will clarify my comment more and state I am thinking of the people that load their carts with toys and things they don't need.
This year has been life changing for us due to Quinn's health problems. It really puts things into perspective for us. Stuff isn't important even though I do like stuff. ( Like my Keurig which was an early Christmas present from Kevin and kids). I am all for saving money and getting great deals. But do kids really need another toy ? Do we really need that other Tv ?
I challenge everyone this Christmas to really think of stuff and how much we buy and give. I know this year I will be doing a lot of homemade gifts ( sorry people if you don't like homemade lol) because home made gifts mean so much more to me. Our kids will get 1 toy each and 1 clothing item from Kevin and I.
We are so blessed to live here in Canada were we have heat,water,food and way more possessions when we could ever need.
What is important to you this Christmas ? Also what are you Thankful for ?
We have so much to be thankful for and I pray we all can see that more and realize what is important in life :)