And the winners are..........

Thank you to everyone who stopped by to learn about about this wonderful children's book! This book holds a very special place in my heart and I am excited to share it with two of you. So, here you go, the winners are........

Chris Floming and Kristine Morgantini

Congratulations!!! Please send me your mailing address at luvmythreepeat@gmail.com. I hope you will enjoy this book just as much as I do.

If anyone would like to purchase this fantastic book, please visit www.pigupstation.com to learn how.

Now, please go and enjoy your life just as Danny did!!!!! 

Fly Danny, Fly

"Not everyone will see your pig, that's perfectly okay.  Some may notice things you don't or in a different way."

Welcome to the wonderful world of flying pigs, silly fish, and a lively boy.  Chip Gilbertson and Gina Restivo are the outstanding authors of the delightful book 'Fly Danny, Fly'.

The book takes you on a wondrous journey with a little boy and his flying pig, Danny.  Only the little boy can see his pig.  After a while, he starts to wonder if he should keep Danny to himself so that he will no longer be made fun of.  However, the little boy finds that life without his pig is lonely and sad.  A chance encounter with an elderly lady at a bus stop changes everything and the little boy realizes that he needs to let his pig fly free.  This book is filled with characters that will steal your heart and a message that kids of all ages should hear more often 'BELIEVE'.  Believing in yourself will enable you to let your pig fly free for all to see.

Meet Chip Gilbertson and Gina Restivo.  Chip and Gina have been writing together for 3 years.  Fly Danny, Fly is their first book with several more to come.  When asked what message they hoped to get across, Gina said "We all see things differently and it's a gift that we do.  We want to encourage parents and kids to embrace imagination and creativity."

In the process of writing the book and while looking for a publisher, Chip and Gina were inspired by a little boy named Danny Stanton.  Danny lived in their neighborhood and died in his sleep from SUDEP (Sudden Unexplained Death in Epilepsy).  Danny's parents (Mike and Mariann) founded The Danny Did Foundation shortly after his death and their strength and determination inspired Chip and Gina.  They knew now that they wanted their efforts to support a cause.  They finished the book and decided to create their own publishing company.  You can find out more information by visiting www.pigupstation.com.  Part of the proceeds now will directly benefit The Danny Did Foundation.

The authors inspire as much as their book.  Fly Danny, Fly is a must read for kids of all ages, it is our official after school read.  The good news?  Two lucky readers will be able to win their very own copy signed by the authors.  All you need to do is leave a comment on this post.  After sending in a comment, make sure to visit their page, you can find them on Facebook as well.

*Contest winners will be chosen December 27, 2011*

Happy reading to all and remember, Danny did enjoy his life, please go and enjoy yours too.

Emily

Meet Emily, she is living with Epilepsy, here is her story.

Emily was diagnosed with Epilepsy back in 1999 when she was in junior high school, she is now 29 years old.  Her seizures didn't start out how people normally think of seizures.  She kept having "deja vu" moments.  Her mother took her to a couple of different doctors and each told her that she seemed to be making up her symptoms and wondered if she was just wanting some attention.  It was only after having 2 generalized seizures that the doctors confirmed she was indeed having seizures and had been for a while.  The cause of her seizures were never confirmed, she does not have a family history of seizures.  The only thing that comes to mind on how this could have happened were some falls she had taken while playing sports, a new acne medication or the Hepatitis B vaccine she had just had.  None of these can be confirmed, it can only be speculated. 

Back in 2000,the beginning of her senior year of high school,  Emily had her first brain surgery at Johns Hopkins in Baltimore, Maryland.  She had a grid of electrodes implanted and was scheduled to have brain tissue removed.  Unfortunately her seizures became so bad that the surgery was cancelled and the electrodes were removed.  Next she went on a special diet and had to fax her doctor what she ate and her seizure activity on a weekly basis.  Her mother found a new neurologist who specialized in seizures related to hormones, which most of hers seemed to be from.  The new doctor told her that she was a candidate for surgery and so she made the choice to once again go ahead with surgery.  She had part of her left temporal lobe and left hippocampus removed.  The doctors told her that the risks of this surgery would be complete memory loss.  She would need to take notes to remind her of people and things.  She did experience some memory loss but not to the extent that the doctors warned her about. 

In 2008, Emily received her seizure response dog Callie.  Her dog alerts her when she will have a seizure so she has time to go take her medication or if she is asleep, the dog will go alert someone else to help.  Emily still has seizures, mainly when she lets her emotions get to her.  She has taken a bunch of different medications and have been selected for studies but has yet to find any combination that completely stops the seizures. 

Emily says the biggest affect that Epilepsy has had on her life is not being able to be independent.  She cannot drive or go anywhere by herself.  It took her a while to get used to never being alone but eventually accepted it.  Last year however, she found the man of her dreams.  She had dated before but as soon as they saw her having a seizure, the relationship would end.  She made sure to tell this new guy about her seizures and his response was "I love you for who you are and will be there for you through anything".  He asked her to marry him in February and they married this past July. 

Emily is also very thankful to her mother and father who have stuck by her side and have tried to help find a way to stop her seizures.  When asked what she would like people to know about people living with Epilepsy, she said that having Epilepsy should not define a person.  Just because a person has Epilepsy doesn't mean that they need to be treated differently, Epilepsy will not keep people from pushing forward and it does not mean that they are not "normal".

Thank you Emily for being willing to share your story!!!!  Thank you for being a shining light and helping spread awareness!!!!!!!

Danny

Meet Danny.  He was a 4 year old boy whose life was cut too short because of Epilepsy.  Here is his story.

Daniel George Stanton was born on March 2, 2005.  He was the third child for Mike and Mariann and they couldn't be happier.  At 2 years old, Danny became an older brother as well.  Danny loved doing many things and was very good at athletics.  He mainly enjoyed kickball and basketball.  Danny loved making people happy, he would help his neighbors Pete and Betty carry in their groceries or help in the yard.  Family was very important to him.  He loved spending time with his mom and dad and was very content when he was with his siblings John, Mary Grace and Tommy. 

At 2 years old, Danny had his first seizure.  While sleeping in bed with his mom, his eyes rolled back into his head and he started shaking.  911 was called and they also took him to their neighbors house who also happened to be a paramedic.  That first seizure almost lasted 10 minutes.  At the hospital that night, they were told  that kids sometimes have seizures for no reason and that he could possibly outgrow them.  Danny's parents began having him sleep in their bed to monitor him.  Danny had MRI's and EEG's all of which showed no underlying cause.  He was never even diagnose with Epilepsy, he was diagnosed as childhood seizure disorder.   He was put on medications and told that he again would outgrow them. 

Danny's parents eventually had him sleep in his own bed but would frequently bring him back in after checking on him and finding him having a seizure, one time his lips were even blue.  Again, the doctors reassured the Stanton's that it was normal and never once did they mention the word death.  After a whole year had gone by, Danny was back in his own bed again.  It had been 18 months since Danny had had any known seizures and the Stanton's were happy.  They trusted that the neurologist had been right and that the course of action they had been taking was successful.

On December 12, 2009, Danny's body was found in his bed.  They tried to revive him, neighbors tried to revive him and so did the doctors and nurses.  Danny died in his sleep to something called SUDEP.  SUDEP stands for Sudden Unexplained Death in Epilepsy.  I am sure I do not even need to begin to tell you of the huge hole this has left in the Stanton family, the sudden loss of a child is a huge blow.  For many people, this becomes the beginning of the end.  Families will never be the same and they somehow just seem to get by each day.  This is not the case for the Stanton's.

Less than a month after Danny was gone, Mike and Mariann Stanton started The Danny Did Foundation.  They have made it their mission to spread awareness of SUDEP.  They have helped numerous families get an Emfit movement monitor that would set off an alarm if a seizure is detected in sleep (monitor issued is based on individual financial need).  You can find out much more information by visiting http://www.dannydid.org/.

With November being Epilepsy Awareness Month, The Danny Did Foundation is holding a campaign.  They are hoping to have 1,000 people donate $25 in order to raise funds to help them raise awareness.  As I write this $2,641 has been raised and we are only in the beginning days.  This foundation is not just another foundation I am writing about.  I am one of those people who have been blessed to receive an Emfit monitor.  I sleep so much better knowing that I will be alarmed if my daughter has a seizure.  Nothing would mean more than to help them so they can continue to help others.  Please take the time to go to their page and learn about Danny and how you can help.  After doing that, please go HERE to donate the $25 tax deductible donation.  You will be making a huge difference in someones life!!!

Luckily Danny was too young to know exactly what was going on.  He went about his days as any normal 4 year old would.  He played with his good friend Charlie, loved being around his Uncle George, age didn't matter when it came to Danny, he loved spending time with everyone.  And that is exactly the legacy his family would want you to remember him by.  Danny cared for others, he loved giving hugs to his mom and dad each and every day.  At such a young age he was able to comfort those around him in such a striking way.  He continues to do this even in death.  I don't know if his family was ever prepared for the amount of love that people would find for Danny, strangers whose lives have been touched by this special little boy.  Danny was a special gift to his family and continues to show his love for others through the work of his parents.

Please take the time to help, learn about seizures and what you can do if you see someone having a seizure.  And please, inform yourself on SUDEP, make it a part of your vocabulary and let others know as well.  And more than anything, please go and enjoy your life just as Danny did!!!!

Emma

Meet Emma.  She is 4 years old, she has Epilepsy and this is her story.

At 3 years old, Emma's mom knew that something was wrong.  For years Emma would stare off and seemed to lose balance a lot more than any other toddler.  Her family was in the process of moving to another state so her mom made an appointment with her pediatrician.  She was told it could be low blood sugar and sent her for tests.  Those all came back normal so she was told that it was typical toddler clumsiness.  Her mom did not feel comfortable with that diagnoses so as soon as they were moved into their new home, she took her to a new doctor.  The doctor briefly talked to her mom about Epilepsy and absence seizures and then sent them home without a diagnosis.  Things seemed to escalate very quickly, Emma's eyes were starting to roll back into her head during these staring spells and they seemed to last for longer than normal.  Scared of what this might mean, her mother took her to the emergency room.  The doctors there were concerned as well and got her an appointment with a neurologist for the very next day.  During that visit, an EEG was performed.  Emma was asleep during the EEG and her mom lay beside her.  Her mother noticed her twitching while she slept and each time that happened she looked at the nurse performing the test and by the look on her face, she knew, Emma was having seizures.  The doctor later confirmed what her mom already knew.  Emma was started on a medication and was told to come back in 3 months. 

The medication Emma was put on suddenly changed her sweet, loving personality and her seizures seemed to get worse.  With a call to her neurologist, a new medication was added.  This new medication only escalated things and Emma became volatile towards her sister and would even get sick from time to time.  After giving her a second dose, a rash was noticed.  After a call to her new doctor, Emma's mom was told that it was probably just the flu.  Her mother ended up switching to a new neurologist who performed an MRI on Emma.  The MRI showed that Emma had a Mesial Temporal Schlerosis on the left hippocampus of her brain.  Her mother was told that in 6 months, if it had grown, Emma would need to have surgery to remove it. 

Emma was put on a new medication to try to control her seizures.  It seemed to work at first but after a couple of weeks, it seemed to stop.  The dose was increased and she seemed fine until it stopped working after another 2 weeks.  At this point Emma had a hard time remembering anything.  She seemed to have complete memory loss some times and would often forget where she was.  There were even times when she didn't know who her mom was.  Emma's mom talked to her neurologist who told her that it is normal with her seizures and not to worry.  At that point, Emma's mom took matters into her own hands.  After reading the side effects of the meds and seeing that all of Emma's symptoms seemed to be the side effects, she called her pediatrician and went in to discuss neurologists.  She also contacted the Epilepsy Foundation in her area who helped her find a new neurologist. 

The new neurologist performed another EEG and discussed medications and possible other treatment for Emma if those don't work for her.  She was slowly weaned off of her other medication and put onto a new one.  the changes in Emma were almost immediate.  She went from having 50 seizures a day and right before Christmas, she was not having any.  Her mother was very happy but yet she still knew something was not right with Emma.  After seeing her neurologist, she was sent to a different doctor who diagnosed her with Atypical Autism and Hypotonia.  She also started physical therapy because of her feet and would soon be walking, jumping and running just like all of the other kids. 

Emma had switched medications once again, had another EEG and another MRI.  This time, the MRI was clean.  Her mom broke into tears.  How could it be clean?  She was told that there was a growth and even discussed surgery.  The new doctor explained that some children's brains do not finish growing until they are 5 and MRI's can often be read wrong.  This was fantastic news for Emma and her family!!!

This past August, Emma started school and is doing outstanding.  She is at the same grade level as the rest of the kids.  She has been seizure free for the past 2 months.  Since she is so young, her mom doesn't notice kids treating her any different and she prays every day that it doesn't change.  The past year has been very difficult on Emma's mom yet she feels this whole experience has made her grow and changed her into a better person.  What her mother fears most is SUDEP (sudden unexplained death in Epilepsy) and would sometimes only get 2 hours of sleep a night being at Emma's bedside.  Luckily Emma doesn't understand fully what is going on.  She knows she has seizures and that she has to take medicine to help control them but that is about it.  One day she will understand Epilepsy more and will not want people to define her strictly by that.

Thank you so much Emma's mom for sharing Emma's story with all of us!!!  If anyone has any questions about Epilepsy or SUDEP, you can learn more at http://www.dannydid.org/ or through your local Epilepsy Foundation. 

 Let's let kids like Emma know that they are beautiful and loved, every kid deserves to feel special!!!

Cassidy

The month of November is Epilepsy Awareness Month.  For each day of the month I am hoping to profile the many faces of Epilepsy.  While this may not help find a cure, I am hoping it will get the word out that there are people living with Epilepsy and unfortunately, Epilepsy has taken loved ones far too soon.  Please read each story, look at their face and help spread awareness.

Cassidy

This is Cassidy.  She is 9 years old and is currently in the fourth grade.  She enjoys singing, dancing, reading and playing with her friends and sisters.  At the age of 7, Cassidy had her first Grand Mal seizure.  She was up early, ready for her first plane ride with her Grandma to visit family.  She was sitting on her mothers lap when her mother noticed a "weird noise" and her body stiffening up.  She asked if she was ok before noticing her lips were blue and her eyes were half rolled back in her head.  Within seconds her mother knew she was not breathing and as she shouted for help, Cassidy started shaking uncontrollably.  The seizure lasted for 3 minutes and she remained unresponsive for 30 minutes after.  After being taken by ambulance to a local Children's hospital and numerous tests later, she was diagnosed with Epilepsy.

Cassidy had a hard time after being diagnosed.  Her medication she was on was not working completely.  She had seizures at school and never felt like she was in control.  She was bullied at school and found ti hard to ignore the snickers and jeers from the other kids.  Within a year her medications were finally able to stabilize her and help control her seizures.  She has made some great friends who stick up for her when she needs it.

If you ask Cassidy about her epilepsy, she will tell you all you want to know.  She is not ashamed by it and wishes that everyone would treat her and others like her like normal kids.  Being left out o hurts, especially when her Epilepsy keeps her form doing some things the other kids can already do.  Cassidy loves being able to go out and spread awareness.  She has volunteered for The Danny Did Foundation and The Epilepsy Foundation of Greater Los Angeles. 

Cassidy is a child living with Epilepsy.  Please help spread awareness that Epilepsy is real and needs to be talked about!!!!



Reflections

I honestly believe with all of my heart that God prepares us for things that will come about in our lives.  One of those things that happens to you and you have no clue that it is preparing you for what lies ahead.  It is only when something happens to you, sometimes years later, that it hits you.  I was prepared for this moment long ago and I am not alone, I will be alright.  My moment hit me this week, it may have taken me over 2 years to realize it but it hit me.  If you have been following my blog for a while or look back at older posts, you will see that my oldest daughter has Epilepsy.  She was diagnosed back in August of 2009 after having a seizure in my arms.  The visuals I have of that morning are still terrifying to me and I think I have been so focused on her treatment and spreading awareness and everything else going on in my life that I never sat down and realized, almost 6 years ago, 4 years before she was ever diagnosed, I had a taste of what my life was going to be.

We used to live in Virginia.  Because we were so close to Washington DC, we would travel there every now and again and see the sights.  We had the hotel we always stayed at and were able to walk to the metro stations and take ti around all over the city.  I am not sure of the name of the station that was near our hotel but it had a huge escalator that got you underground to the metro.  I am not sure if I am giving the size of this thing any justice by just saying huge, this thing was more than huge, I am sure if it went straight up and down it would be at least 8 stories tall.  You could not see the bottom when hopping on it and halfway through, you could no longer see the top.  It is not terrifying, it goes slow but being on an angle really screws with your head.  I think it was our second trip up to DC and we were once again on the gigantic escalator, looking forward to spending a day in our nations capital.  About halfway through, a woman who looked to be in her 20's collapsed.  A gentleman with her jumped over the rails and used the stairs (I forgot to mention the stairs that ran in the middle of the escalators, if you were a super athlete and wanted to use them) to run to the bottom and turn the escalator off.  Some people around the woman were screaming but the people with her remained calm and asked everyone around them to calm down as well.  The escalator eventually stopped and within minutes they had the girl off and being taken to the bottom by using the stairs.  I was pretty shaken.  What the heck just happened?  Would she be ok?  I remember my oldest asking if the lady would be ok and I told her I didn't know but it looked like they knew what they were doing.  After the escalator started moving again and we made it to the bottom, the girl was sitting on a bench drinking a bottle of water and people around her were making sure she was ok.  Since we had to wait for out train, we were able to hear them talk to others.  I heard things like "yes, she is ok, this happens all the time"  "She is ok, the seizure was a typical seizure for her", they kept asking if she felt fine and she was responding as if nothing had happened.  I was very confused.

Who knew that 4 years later I would be in the same spot.  Only, it wouldn't be routine for my family.  That morning brings back bad memories, seeing her not breathing, her lips turning blue, her body violently shaking in my arms and her unresponsive for more than 30 minutes after, we thought she was gone.  After those 30 minutes she was ok.  She sat up and was eventually smiling, able to answer questions.  We took a couple ambulance rides and were admitted to a children's hospital in our area where she went through numerous tests and was diagnosed.  I sat in awe this week after remembering our DC trip.  That could be us one day, seizures can come even when you are on vacation, they don't care where you are. 

Another thing that hit me from that day was the way it was all handled.  They knew what they were doing, they knew what to tell the people around them and they knew the kind of help their friend/daughter/sister, whoever she was, they knew what she needed.  I did not know what to do that morning.  Luckily my mom and my daughters father were there and were able to tend to her while I called 911.  But they still made mistakes and it is all because we as a society don't know what to do.  We may vaguely remember what was told to us years ago, put something in their mouth so they don't swallow their tongue.  Did you know it is impossible to do that?  This week a friend of mine shared a clip form the Dr.Oz show.  He actually went over seizure safety, never before have I seen this on day time television.  It was a great clip, he pulled a lady form the audience to help and show what she would think to do (which was obviously not right) and then he proper things to do.  If you have a couple of minutes, please watch the video and be informed.  You never know if something like this can happen to your loved ones or if you see a stranger who needs help.  My friend Julie who lives in Japan told me that she was at a local market and saw a lady having a seizure and everyone was standing around watching her, not knowing what to do.  She was amazing and stepped in.  I am sure I don't have to tell you how amazing that act is to me and how much she means to me, she is a rock star!  So, please watch and be like Julie, help someone when they are in need!!!

http://www.doctoroz.com/videos/seizure-first-aid

Epilepsy Awareness Month is next month and I am planning some special events.  If you live in the Southern California area and would like to get involved, please let me know.  If you do not live in the area and would like to help anyways, please contact me.  Together we can make a difference!!!!!

Raise Awareness

I write this blog to keep people updated on the goings on in our lives here.  I started this years ago, mainly for my family since I was living out of state and I would always get asked what was new and didn't want to repeat it all the time.  Somehow it has turned into something more.  I am sharing our life's struggles, our highs and our lows and throwing some recipes and fun stuff in from time to time.  Almost 2 years ago we started walking down a new road.  My oldest was diagnosed with Epilepsy, you can read her story over here.  It took me a little while to feel like I was standing strong again, it really knocked me down for a while and ever since then, I want to raise awareness.  Not only for her, but for kids who no longer have a voice, in the video below, it is summed up perfectly, "life isn't fair, sometimes it just isn't".  That statement is so true.  Seeing my child lay in a hospital bed hooked up to IV's and undergoing numerous testing, I think, life is not fair.  I wish I could take her place for her and go through her pain for her but I also think, no one should have to take her place.  It isn't fair for anyone to have to go through this.  Please take a moment and watch this video.  These are just a handful of families who have been affected and thee are numerous more out there.  I am one of those families.

After watching, if you feel the need to help or want to know what you can do for families like me, please just let me know.  One thing you will find about people living with Epilepsy is that they want people to know and they don't mind people helping raise awareness on their behalf.  Thank you in advance!!!

Emfit

I have mentioned before that the Danny Did Foundation was very generous and has provided our family with an Emfit monitor.  I also know I have had people ask exactly what an Emfit is.  So, I am going to tell you :)  First just let me explain a little bit.  The Emfit monitor is a device that goes under a persons mattress and will detect seizure activity that will then trigger an alarm.  Why might someone need a monitor while they sleep?  During the day if someone were to have a seizure, there would hopefully be someone around to see them having one and be able to help or call for help.  If it were to happen in their sleep, there is no one around and they can end up dying or suffering from severe complications.  This is not uncommon, it is far more prevalent than you may think.  Unfortunately children like Danny Stanton and Chelsea Hutchison.  And age does not always matter, ask the family and friends of Donna Evans.  The Emfit gives us all a better nights sleep.  I now know that if my daughter were to have a seizure in her sleep, I would be notified and be able to help her.  Now, lets get to the actual monitor.  The main part is the sensor that goes under the mattress. 

Please take note.  This part goes under the mattress, let me say it again for those whose brain is like mine, it goes UNDER the bed.  Ok, so I knew before I even had one that it went under but to be honest I was pretty darn confused after reading the instructions it came with. The monitor went off 5 times the first night and when I called the company to see what was happening, was my child really seizing that much?!  She seemed fine when I went into her room after hearing the alarm, I was confused.  After telling me what i could do, the lady asked me nicely if it was indeed UNDER the mattress.  I thought about lying at first..."are you kidding me?  Of course it is under, I know how to read!!!", but I told the truth and told her that the instructions confused me.  She asked what page confused me and it turns out that the page I read was removed from the instructions long ago because it was confusing people and she didn't know why mine still had that page in it.  So, I didn't feel as lame.  So, the picture above was after we put the sensor on top of her mattress cover and then proceeded to put a mattress pad on top of it and her sheets.  Needless to say, we could have broke the darn thing and I would have felt awful.  So, the sensor goes UNDER the bed which is where ours resides safely now.  Ok, so the sensor has a cord that plugs into a little box.  That little box contains all the settings and computer techy stuff (yes, I did major in computer techy stuff, how could you tell?......and if you are like me, let me point out that I am saying that with total sarcasm, yes, sometimes I need things pointed out).  How do I get off on so many tangents, lets get back to the Emfit........the box that attaches to the sensor is mounted on our wall and besides it containing the techy stuff, it also sounds the alarm when a seizure is detected and the lights that flash on and off let me know it is working properly. 

That blue light?  That was flashing in between the green and blue flashing together.  That meant that it was not detecting anyone on the sensor (which would make sense because no one was on it, I was testing it out).  It really is a brilliant piece of equipment and unfortunately not covered by insurance in the United States.  It is covered by insurance if you live in Canada and Europe, but not he United States.  I will be helping to get this changed one day!!!!!  Until then I was blessed by having the Danny Did Foundation come along side me and help me get one for my sweet girl.  I am hoping you never have to own one of these because that would mean you are suffering from seizures.  But let me tell you, if it ever does happen to you or your family, there is help out there.  There are a ton of people who care and who are making it their life's mission to get the word out on Epilepsy and help others who are affected.  I am honored to now say that I am an Epilepsy Advocate and will do all I can for my child and everyone out there who is living with Epilepsy!!!

Talk About It

Today I am in a funk.  For some reason my mind keeps going to families who have to bury their young children.  No parent should ever have to bury their child.  I think it is the holidays coming up and thinking about the Stanton family who will not get to have their son Danny with them.  It just breaks my heart into a million pieces.  Let me say it again.....NO PARENT SHOULD EVER HAVE TO BURY THEIR CHILD!!!!!  No, there is not a cure for Epilepsy...yet.  I am hoping that sometime in the future there is one, but there is technology out there that can get the person who is seizing help during that seizure.  And the parents of Danny are making sure that each family who needs one, gets one (through their Danny Did Foundation).  And guess what?  We were one of those families.  Every night I get assurance when my sweet girl goes to bed.  I tuck her in and turn on her monitor.  I know that when I hear the alarm, that I need to get to her and be by her side.  Without her monitor, I would sleep right through her seizure and God only knows what could happen, and it can happen, just ask the Stanton's. 
I know that many people don't know what to get others for Christmas and a lot of people are looking for unique gifts and for gifts that make a difference in the world.  Danny Did did not ask me to say this but I feel so strongly about it and love this foundation so much.  So, this is my idea........donate.  Yes, it really is that easy.  Donate in someones name, donate in your name, donate in the name of a child who suffers or for their families.  In doing this, you will be giving the ultimate gift to those in need and potentially helping aid in saving lives.  And if you cannot donate, please take the time to get educated.  Would you know what to do if you saw someone having a seizure?  If the answer is no, you need to find out.  I didn't know what to do until we were in the hospital with our child wondering what on earth was going on.  That to me is too late to figure it out.  And please take the time to watch this video.  This is Mike Stanton, Danny's dad.  To be able to walk through grief and help others at the same time is amazing to me, they truly are heroes to me!!!

Epilepsy Freedom Walk 2010

I cant believe it has taken me this long to write about the amazing time we had at our first ever Epilepsy Walk!  I partly blame it on my computer being down for a while but ti has been back up for a good week so I can rightly now blame it on my lack of brain cells I seem to be having lately.  Seriously people, the other night we went out to dinner and as we were walking out of the restaurant  had that brief second of "oh my gosh, where is the baby", which I then realized was in my arms.  Perhaps I can blame the fact that she wears this squeaky shoes everywhere lately so I am used to hearing it when she is walking beside me so to not hear them made me think she was not with me.  Then again, I really should be blaming the lack of brain cell usage.  Ok, enough scattered talk, lets get to our walk.

Cass and I were accompanied by my Uncle Bill, Aunt Mickie, Aunt Kathy and both of my cousins, both named Jessica.

It was a chilly rainy day in Pasadena, CA but they didn't stop people from coming out.  I think they said ti was close to 1,000 people who were there.  After registering we were able to go to different booths and for Cass to make some crafts.  We got a lot of great information, from finding out about something called SUDEP (sudden unexplained death in Epilepsy) to new meds that are out.  One of the defining moments, as far as Cassidy goes, was when she was going to take her picture with a seizure rescue dog.  She is very intimidated by dogs, I don't think the dog attack and 18 stitches in her face at age 3 helped that fear whatsoever.  But, when she saw the dog, she knelt down and hugged it around the neck and smiled for the camera.  Who is this child?!!!  I wanted to cry!!!!  Soon after that, some people from the Epilepsy Foundation of Greater Los Angeles stood up to speak.  And they introduced the chair for this years walk.  For the second year in a row, Greg Grunberg was the chair of the walk!!!  He is not just an actor, his son has Epilepsy.  He said some inspiring words and then we were off to walk.  It wasn't a long walk but it was inspirational to me.  At one point there was a group of people standing off to the sides cheering everyone on and when they saw our shirts, they yelled "Go Team Cassidy!!!!"  They spotted Cass and asked if she was Cassidy and after telling them yes, they yelled "woo hoo, go Cassidy!!!!"  Her smile was priceless.  The walk may have been small but the strides we made were mighty!!!!!!!!  I hope more can join us next year.  Until then, be inspired and talk about it!!!  Spread the word and lets make a difference!!!

Meet Danny

This is Daniel George Stanton, also known as Danny.  He was born on March 2, 2005.  At 2 years old, he had his very first seizure.  His parents made sure that he got the proper medical attention and were told, as we were, that children can have unexplained seizures with no known cause.  He ended up having more seizures, mostly in his sleep.  On the morning of December 12, 2009 his parents found his lifeless body in his bed.  After trying to revive him, neighbors trying to revive him and the hospital staff trying to revive him, he was pronounced dead.

This is not the first or the last child who will die in this way.  There is a term for this, it is called SUDEP, Sudden Unexplained Death in Epilepsy.  While I was at the Epilepsy Walk there was a booth with numerous stories of beautiful children and teenagers who have died in this way.

I know you are thinking the same thing I am, something has to be done about his!!  But how?  I have always stressed that just talking about it, letting people know about it, can make a huge difference.  I had no clue about Epilepsy until I was sitting in the hospital next to my 7 year olds bed wondering what the heck happened to her.  One moment she was sitting on my lap getting ready to go on a fun trip with grandma, next she was seizing in my arms.  Why?!!!  After being released from the hospital, I was a nervous wreck.  I slept on the floor of her room and with every movement, I was at her side.  Needless to say, I never slept.  We tried buying a baby video monitor, but what good does it do if you are asleep, her seizure wouldn't wake me up.  Something has to be available out there!!!

Shortly after she was diagnosed we started going to meetings at a foundation called the Epilepsy Alliance of Orange County.    Their monthly meetings brought in neurologists and specialists to speak with parents and patients.  Before attending your first meeting, they recommend taking Epilepsy 101.  While taking that class, amongst numerous other things we learned about something called an EMFIT.  It was a monitor made for the bed that would alarm if the person with Epilepsy had a seizure in their sleep.  This is exactly what we needed!!!  Where do we get one?  Can I have it delivered first thing tomorrow morning?!  Oh, it cost how much?...............

Needless to say, the EMFIT monitor is not cheap.  But it is necessary.  We were told that the EMFIT is covered by insurance over in Europe because it is seen as a necessity for people with Epilepsy.  But not here in the United States.  So, we would have to pay out of pocket.  We are a military family with 3 small kids, how are we going to be able to afford this monitor?  We ended up putting it at the back of our minds, constantly wondering how long it could take to raise the money, we need this monitor!!!  Not only for our peace of mind but for the safety of our child.

That's when a friend of mine, whose little girl was recently diagnosed as well, told me about the Danny Did Foundation.  She said that they can help us financially with getting an EMFIT.  This seemed too good to be true.  I went to their website and read Danny's story.  I was heartbroken!  I was scared, could this be my future?  After composing myself and after a few prayers, I e-mailed the foundation.  I let them know a little about Cassidy and asked if it was true if they could help.  The next day I got a phone call from a man named Tom.  He is Danny's Uncle.  We talked a little about Danny, Cassidy and he made sure I knew all about SUDEP.  He told me that they would be willing to help me get an EMFIT.  I was overwhelmed.  I wanted to roll up in a ball and cry.  Never have I come across such genuine, kind hearted generous people.  They have turned their heart break into something wonderful.  They could have easily gone under the radar undetected, mourning the loss of their sweet boy.  But they haven't.  They care about people living with Epilepsy.  They want to see them survive and live the type of life Danny most certainly would have.  Pleas,e take the time and go to their website.  Read Danny's story and find out how you can help!

November is Epilepsy Awareness month.  One of the things that the Danny Did Foundation is doing is raising money for the cause.  They are asking 2,000 people to donate $25.  Can you decide to make coffee at home instead of get it out in town?  Can you decide to make more meals at home instead of buy out?  Do you have any extra change lying around that you can turn into cash?  These little things can make a difference and instead of being satisfied with your morning latte, you can have the satisfaction of helping people affected with Epilepsy.  Lets help our children grow to see their future.  Please, help in any way you can.  Post this blog to your page, whether you have your own blog or Facebook, Twitter......anything.  Lets get the word out!!!!!!!!!!!!

Epilepsy Freedom Walk 2010

In just a couple of weeks, my sweet girl and I will be walking in our very first walk for Epilepsy.  This in itself is a huge stride.  We have gone through quite a bit this year.  Meds were not working properly, seizures were still happening quite frequently and my girl was always tired because of all of the change going on in her body.  We have recently celebrated one year with epilepsy, I know it sounds silly to celebrate living one year with a disease but we are excited.  She could be in a hospital bed or a wheelchair, she could be having seizures that could keep her from living a normal life, but just one year into it, we are starting to get the hang of things.  We do still have our small set-backs but she is living a normal life, as normal as it could be.  And she is so excited to walk for Epilepsy!  She is even more excited that she can get sponsors to sponsor her in her walk.  And that money that is donated will be used to help find a cure so that not another moment is lost to seizures.  One day children will not have to worry about being around loud sounds, or seeing flashing lights or wondering if they will have a seizure in front of kids who will wonder why "that kid is so weird".  I know that for some it is a tough time financially, but if you have anything to spare, we would forever be grateful and you would have the satisfaction knowing that you are helping a wonderful cause and wonderful children.  If you can donate, you can go to www.EpilepsyFreedomWalk.org and sponsor a walker, look it up under Cassidy Hall.  And if you cannot donate financially but live in the Southern California area, come and walk with us on October 17!!!  All ages are welcome and you can register at the same website.  It will be a great time!!!!  If you have any questions, please don't hesitate to ask.  Lets make this event extraordinary!!!!!

Get Informed

I am currently reading the book Facing Your Giants by Max Lucado.  I have been blown away chapter by chapter, it is wonderfully written and leaves you thinking about your life and changes you can make.....and I am only on page 43!  However last night kind of threw me.  I am sure it is not anything close to what the author was trying to get to stand out, however, being a mom of a child with Epilepsy, it stood out to me.  He was referencing the story in the Bible about David and Saul.  And how David was running from town to town trying to escape from Saul who was trying to kill him.  He came upon the Philistines who knew who he was and they were wanting to turn him into Saul.  So, what did he do?  He acted crazy, he acted crazy so that they would think he was crazy and just make him leave the town and his life would be spared.  However, that is not how it was said in the book.  This is from the book:
"He sticks out his tongue, rolls in the dirt, grunts and grins, spits, shakes, and foams.  David feigns something like Epilepsy.  The Philistines believed "an Epileptic was possessed by Dagon's devil and that he made husbands impotent, women barren, children die, and animals vomit."  Fearing that every drop of an Epileptics blood created one more devil, the Philistines drive Epileptics out of their towns and into the desert to die."
It goes on from there obviously, that is not the end of the chapter but I could not concentrate for the life of me on what else was said.  I was fuming!!  I understand that that way of thinking is not from today, but isn't it?  I was once a mom to a perfectly healthy kid and had no clue what Epilepsy was.  There is a huge stigma out there for people living with Epilepsy.  We may not be driving Epileptic people out of our towns and into a desert for them to die, but we sure as heck can make them feel little, feel dirty, like they don't belong.  There are a lot of people who think that if you drink after someone one who has this disease that you can get it too.  Or they think that they are mentally crazy or incompetent, that they cannot do normal everyday things.  These things are so far from the truth.  Here are some facts:
You cannot ever get Epilepsy from drinking after someone. 
People with Epilepsy are not crazy or mentally unstable.
People with Epilepsy can do normal activities like a "normal" person.
I can tell you this.  My daughter cannot swim because she has Epilepsy.  We were told by her neurologist that it would be best to keep her out of the water because if she were to have a seizure in the water, she would drown (obviously).  She can go in, but it would be best to have an adult next to her at all times.  But get this, the girl has hated water since she was born.  She was never the kid who enjoyed bath time or swimming.  She hated water on her head and is terrified to go into a pool.  How awesome is that?  Ok, so it is not awesome that she is terrified or banned from water but could you imagine having a child who loves the water and then at age 7 is told they cannot go in or it would be dangerous going in?  To take away something they loved?  I totally believe that was a God thing.  He knew that at age 7 Cass would have her first seizure and get diagnosed so I believe that He gave her that insecurity with water.  She used to not be able to run because getting over heated or breathing intensely would throw her into a seizure.  But with her meds, she can now run to her hearts content.  There may be things she cannot do, but it is not obvious.  If you were to meet her, you would never know.  I feel like Epilepsy still has a big stigma that comes with it and the best thing you can do is be informed.  Not only is it good knowledge for you, but you may come across someone one day who has it and would know all the ins and outs.  There are numerous resources, we are part of the Epilepsy Alliance of Orange County and Los Angeles.  Epilepsy.com has a lot of good information as well.  So, lets all educate ourselves, it cant hurt right?

Anniversary

Yesterday marked an important milestone in my older girls life.  One year to the day was the first time she ever had a seizure and the day we were told she had Epilepsy.  The day still stands out in my mind, I can relive it like it was yesterday.  Cass was so excited.  For months she was excited because on August 22, 2009 she would be taking her first plane ride with her Grandma to go see her Aunt, Uncle and cousins in Washington.  The day had finally come.  Grandma was spending the night so they could get up super early to go to the airport.  I went to her room around 4 am.  I remember her waking up all sweetly and giving her a hug.  I told her it was time to get ready and how much I would miss her.  She looked straight in my eyes and told me that she would be ok, everything would be ok.  I didn't know then but those words would be something I would come to cling to in the next 24 hours.  It was a quick morning, she got dressed in a sweat outfit so she would be comfy on the plane, I threw her hair up in a ponytail and she was good to go.  Will was up too and we all headed downstairs.  My mom was still getting ready in the bathroom around he corner and Will, Cass and I were sitting on the couches in the living room.  Cass was sitting with Will and he was telling her to be good and he would miss her.  She said he was silly, walked across the room and onto my lap.  That's when it happened.  I didn't know what was going on at first, her face was looking away from me so I couldn't see her, but I heard this strange noise she was making.  I looked her way (still on my lap) and her arms were frozen up near her chest.  Since I couldn't see her face I assumed she was joking around being a dinosaur or something.  I even told her "Cass what are you doing?.............Cass?  Cassidy?!!!!"  As I was saying this, her head was slowly turning toward me.  And when I say slow, I mean slooooow.  As soon as she turned to me, her eyes met mine and I could see her mouth was blue and her eyes half back in her head.  "Oh my God, she isn't breathing!!!!!!"  As soon those words came out of my mouth Will jumped up and my mom came running.  I was standing by then with her in my arms, lifeless but stiff as a board.  Then the shaking began, a violent shaking so rough I felt I would drop her and so I put her on the floor.  My world at that moment was spinning.  My mom was standing over her trying to get her to come to.  Foam started to come out of her mouth and by then I was running up the stairs to get to the phone.  I came down with 911 on the phone and all I could see was my pale faced unconscious little girl.  My mom asking her to wake up......I ran outside.  I screamed for help, 911 was not there and I wanted help!!!!  Please someone, help my little girl.  My neighbors heard my screams and came running.  They dashed inside, another neighbor came to see if I was ok.  She just held on to me and waited for the paramedics to come.  And they took forever!!!  I know we live in new housing but they should know their dang streets!!!  A police officer was driving by and we flagged him down and he was able to get a hold of the crew and tell them where to go.  The operator kept asking me if she was breathing, I just couldn't bring myself to go inside.  I knew my mom and Will could handle it, I was a mess and seeing my girl on the floor not moving scared the hell out of me!!!  That's when the flashing lights started coming down my street.  The paramedics jumped out and went inside.  I followed, a little more comforted knowing they could help my sweet girl.  She was laying there with her head to the side blankly staring at the couch, not responding to anyone.  About 5 minutes after the paramedics got there all of a sudden she looked at my mom.  She looked so confused, I wanted to grab her and hold her and tell her how much I loved her, how sorry I was for running and leaving her, to let her know I would never run again.  But I couldn't, they needed their space to run tests.  They were very sweet to her but you could tell she had no clue what was going on.  To her, she was just sitting on my lap ready to go on a trip and the next thing she was on the floor with grandma and the paramedics surrounding her.  They said she was stable and that we would be going by ambulance to the hospital.  I knew I needed to go with her, I would not be able to drive first of all and not knowing if she was ok would drive me nuts.  Will drove behind us and my mom stayed with the younger 2 girls.  Before we left I remember asking my mom if she was ok because I was a wreck, she said she would be but I knew she was just as shaken as I was.  We made it to the local hospital where they would put in an IV, do a cat scan and run some blood work.  All the while calling around to local children's hospitals because after all, it was Saturday at 5 am and no specialists seemed to be working at any hospital that day.  Eventually they got confirmation from Children's Hospital of Orange County (CHOC) and withing 2 hours we were being transported again.  The people at CHOC were amazing!  They made my little one feel good and tried to put me at ease.  Will was able to get there within the next hour.  We had a nurse come in to perform an EEG, that's where they stick little nodules on your head that connect to a computer and they read your brain activity.  I was looking at the screen but of course had no clue what any of it meant.  But I knew it was not right.  The nurse had this look on her face and kept highlighting certain areas.  She kept telling Cass it was ok every time the lines went funny and Cass would curl her toes and get tense.  The nurse didn't even finish.  She excused herself and came running back in with the neurologist.  He looked at the screen, saw the parts she highlighted and told her she could stop the test.  He said that he would be back in to see us in just a bit.  They took the stuff off her head, which is held on by weird gooey sticky glue.  Will and I took our little girl into the bathroom and gently washed her hair and all the yuck away.  When we came out our doc was in the room.  Cass was put back in bed.  The doc said he just wanted to do one more test.  He had Cass sit up a little and start breathing heavily as if she had been running.  He was doing it too and having her follow him and before I knew it, she was back into a seizure.  He seemed pleased to know that happened but I looked away and couldn't help but cry.  What was going on?!!!!!  She was fine yesterday, she was healthy!!!!!  He sat us down and gave us some papers.  He told us she had something called Epilepsy.  That she would be getting an MRI done to make sure that no damage had been done to her brain and then we would start her on medicine, medicine she would be taking for the rest of her life.  He left the room and I told Will I had to leave for a minute.  I went down the hallway, into the elevator and lost it.  I felt so empty, I felt like the weight of the world was on top of me, I felt like someone had ripped open my chest and took my heart out.  I had to go outside and breath.  I had to call my mom, call my family.  I told them about this thing called Epilepsy, what it was, what it meant, saying the word was so strange to me.  But I knew I had to face it. I knew I needed to  cry, to scream and ask why......and then I knew I needed to go upstairs and be my little girls rock.  To make her laugh and see her smile.  So I did.  The nurse wasn't too sure if the MRI would be a success that day, the anesthesiologists were gone for the weekend and most kids and even adults needed to be sedated for the MRI because they had a hard time keeping still.  We said we would try and if it failed we would come back during the week.  Can I just say, my little girl rocked!!!!!!!  She laid still the whole time, for 45 minutes she laid there and didn't move a muscle!!  The doc told us everything looked fine but would have the other doc read it and let us know for sure before we left the hospital.  All of the nurses were so proud of Cass, they all came in with gifts and hugs.  Did I mention  how amazing the people at CHOC are?  That night was rough.  Cass slept the whole night but I think I only got 30 minutes.  I kept waking up to check on her, scared something would happen once I closed my eyes.  So I opted to stay awake.  I sat and watched her, I cried, I prayed to God for her to be ok.  The papers they give you to read have some awful stuff on them, I know they need to give you all the scenarios but it is a scary thing to read!  And the video they had us watch wasn't much better.  We left the hospital the next day, with her new meds in hand and a sweet smiling little girl.  She was pretty tired for the next 3 weeks, just wanting  to lay on the couch but week by week she was stronger.  We are now on her third medication.  The first 2 didn't work and she would have small seizures.  She is doing fantastic these days!!  Her last EEG was her best one to date and she is a champ at them.  She still has some problems and I know that even though things are great now, that they may not be in the future, but I stronger and know that whatever happens, we will get through it.
Whenever I read stories of tragedy and triumph or kids who are sick, I always want to know how I can help.  There are many ways to help Cass and other kids (and adults) just like her who are living with Epilepsy.  You can donate money to causes that help find a cure.  We love the Epilepsy Foundation, they are a nationwide organization but they also had different local branches.  You can also participate in activities that raise awareness and money to help find a cure.  On October 17 we will be walking for a cure in the Epilepsy Freedom Walk, if you would like to walk with us as part of team Cassidy, let me know, we would love to have as many people as possible!!!!!  And if you cannot donate money or time, please take a moment and be informed.  There are many amazing sites that give great information.  Helping someone while they have a seizure is easier than you think.  Here are just a few things:

1. Never try to stop a person from having a seizure, holding them down can hurt them more.
2. Never stick anything in the persons mouth.  They cannot swallow their tongue!!!!!
3. If at all possible, try to turn the person on their side if you see they might be choking, by doing this any saliva or blood from biting their tongue will come out of their mouth instead of down their throat.
4.  Try to clear the area around the person, hard or sharp objects could pose a major risk.

Thank you for reading.  I know this is a huge post and many who read it wont think twice.  But if this has touched you in any way, please do what you feel you can.  I am hoping that one day we will find a cure, that no one will have to have any more moments of their life lost to a seizure.

I will leave you with some pictures.  I have contemplated on whether to post her picture of her first EEG.  I feel like it would put an image in your mind that would hopefully light a fire but at the same time, it saddens me.  I can see the fear on her face and for that very fact I don't feel comfortable posting it.

This was taken the day after, we were still in the hospital and had gone down to their play room.  she was making a picture to bring home to Grandma.

This was earlier this year at a Purple Day Celebration, put on by a wonderful neurologist in this area.  she was able to meet other kids who have Epilepsy just like her!!!!