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!!!!



Well Said

I am hoping you all can read this article.  I saw it in a post from a friend of mine on Facebook and love the response.  I think a lot of people out there agree that being a stay at home mom is hard work but I also know that a lot of people think we just sit around on our butts watching soap operas and eating bon-bons. 

I am struggling a lot with the stay at home mom job.  I love it, it is what I have always done and within a couple of months, I will not be employed in that area any more.  Getting a full time job scares me.  2 of my kids are in school so I know where they will be during the day but I still have one at home who will now have to be raised by someone other than me and that bugs me.  Not to mention, I love being there to take my kids to school and pick them up after.  If they want to do an after school activity, sure why not, I will pick you up a little later than normal.  So, getting a job will make me unable to do those things.  As much as people tip their hat to those of us that stay home, I have to tip my hat to those who work.  Those who give up that time with their kids and basically have someone else raise them 5 out 7 days of the week. 

To back up the article though, since that is what i initially intended to write about, let me back it up a little.  This is my day today.  My 2 year old climbed in bed with me around 2:30am.  She kicked and hit me numerous times, then decided she wanted to be awake.  After about an hour of her wanting to chat, I asked if I could put her back in her bed, she said yes and it was as if I heard angels singing.  So, off to bed she went at 3:40am.  I slept for another 2 hours and 20 minutes and then it was time to get up.  I made breakfast, got kids dressed, did hair and drove them off to school.  My youngest is now eating her breakfast and as my laundry washes, I am able to sit down to this for a bit.  As soon as that goes off, I will be thoroughly scrubbing my middles room and washing bedding and cleaning up the rest of the house.  All of this will be done while I also make lunch for my youngest, help her go potty every hour and make sure she knows I am actually very interested in her baby dolls and rocking them to sleep.  At noon I head off to get my middle one from school and 45 minutes after I have to go right back to get my oldest.  We come home to do homework for the both of them and then we have doctor appointments.  Dinner will be served and baths will be had.  Bed time stories and prayers need to be said and hopefully they stay in bed after they are put there.  So, that being said, does it seem like I sit around all day?  Could you understand why i would be tired if this is what I do every day and if I had 10 minutes to myself, how I may want silence?  I am sure the girl who wrote in felt foolish enough reading the response, I am not sure if she was prepared to have it start making its rounds on the internet.

And I pose a question relating to those women who do work.  When you come home form work, your day is like mine, so how do you do it?  I think the grass always looks greener and you wonder how everyone else gets along.  Did I mention I have subscribed to Working Mother magazine to try to prepare myself, lol.  I am worried!!!!  I would like to end with this though.  Whether you stay at home or whether you work and raise your kids at the same time, I think we are all pretty remarkable.  There is so much one every ones plates and sometimes it is hard and sometimes it is not but we push forward and know that there is a silver lining and it will be worth it all.  Good job ladies!!!!!

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!!!!!

My Internal Organs Are Working!

How do I know my internal organs are working?  Because I feel these babies in them.......

Yes, these are gallstones and no, they are not mine.  The reason these are not mine is because mine are still within the confines of my gallbladder.  They may look like sweet little pebbles that would look pretty in a rock garden but they don't feel so pretty.  They hurt and they make you nauseous and they need to be taken out in one way only.  So, next week I go in to have a surgeon consult and we discuss my surgery and hopefully I will feel some relief shortly there after.  The good news with all of this?  I have dropped a good amount of weight since even water can kick my butt and send me running for the bathroom.  As much as this weight loss excites me, I do not want to keep my friends within me for much longer.  So, I apologize for not being on here as much, I try to lay down as much as possible and do nothing, ti seems when I do too much they get aggravated and voice their opinion.  I do have some exciting things coming up on my good 'ol blog though.  I hinted a while ago about some flying pigs and pretty soon all will be revealed.  So, stay tuned and tell your friends, I promise it is going to be a good time!!!!

Crazy Day In This Crazy World!

I don't think that October 3, 2011 was a very good day for quite a few people out here in southern Cali.  Mine started out crazy and ended crazy and I am glad ti is now October 4, 2011.  Our first bout of crazy times hit when I realized that my middle girls earring back on her left side was actually implanted within her ear lobe.  After dropping the oldest off at school, we headed to the ER.  It was there that they found the other side was in there as well, not nearly as bad as the other side since I had pulled the earring not knowing it was in there.  So, 2 needles, a scalpel and 2 sliced open ears later, her earring backs were out and in a cup for us to take home.  My girl was brave, she didn't cry at all and the doc repeatedly told me how good she was and even rewarded her with a purse filled with coloring books, markers and clay.  We were able to come home for a brief second before getting my oldest out of school early to head to her neurology appointment.  Little did we know that as we passed a point on the freeway, a shooting was going down on the northbound side.  We soon found out when we got down to the hospital and the freeway was empty and the nurses informed us.  How were we to get home?  Side streets aren't too bad right?  Wrong!!!  When an entire southern Cali freeway is evacuated, it makes side street driving beyond ridiculous.  3 hours later, when it normally takes 45 minutes tops, we were home and feeling very lucky to have not been on the other side of the freeway at that moment.

I feel that I am completely aware that evil exists in our world.  I would like to see the world through rose colored glasses and at times, I do.  I like to seek out the good and bring smiles to peoples faces and have a smile on my own, but I am very aware that not everyone thinks this way and that some people may want to seek out the complete opposite.  I just don't understand driving down a freeway and shooting at random cars.  As I drove home it made me think, how would I deal with that?  I could stop and get us all down, but my younger one is strapped in a seat where she is unable, would she be harmed?  It is such a scary situation.  On the news last night a reporter went to the door of the family of the suspect (who is still out there at this very second) to ask if they knew he was capable of doing this and where he might be, etc.  The sister answered the door and just seemed to not care.  She had no clue where he was since he had moved out over the summer and didn't care where he was.  Not that I feel any sympathy for the man and what he did but I have to think, they seemed so uncaring.  Did he grow up thinking he was not loved and therefore started to hate people, people he had not even met?  After growing up, did he not have friends who cared or  a family who noticed his absence form love and took him in?  It really makes me want to smile more at people, especially those who look like they might need one.  Is it too hard that as a society, as children of God that we can band together and take care of one another whether blood related or not?  I know this is my rose colored glasses speaking but I think a little kindness can go a long way.  There was the story that was circulated years ago about a kid who was going home to kill himself because he felt that no one cared about him.  When he dropped his school books after getting off the bus, another kid came up and helped him and walked him home.  The kid decided not to do it and years later at graduation told everyone in his speech and the friend had no clue he had saved his life.  How amazing is that?  A small act of kindness kept a child form taking his life.  As a society I think we can all step up a little, show some compassion and you never know, maybe you will keep someone from trying to kill others or take their own life!