Protecting Your Child

These past couple of weeks have been crazy.  Not only am I now enrolled in school 4 days a week, an hour from home (which makes for a long night of driving with sleepy kids), but I have had to go to battle with my middle child's school.  I never thought I would ever have to battle for my child in this way and it makes me sick to think that this kind of thing can happen.  My mom always told me growing up that I like to see the good in people too much and that I need to wake up to the reality that not everyone is good and to think the worst before the best.  I never took her advice because seriously, who wants to walk around all the time thinking the worst in the human race, isn't it better to think the best in people and then if the worst happens, you deal with it as such?  These last 2 weeks have truly tested me.

Without going into too much detail, my middle child was put in a first grade class with a teacher that I was warned about from the beginning.  She is tough, most kids and parents don't like her and she is "an acquired taste".  I decided to try it out without worrying too much, maybe I would be the 1% who actually liked her.  Little did I know how wrong I would be.  It started out with notes every single day explaining my child's bad behavior and how she was not "good".  It then went to threats if work was not done, to her denying her snack, keeping her in from recess, it just kept getting worse.  I got a call one day from the Vice Principal saying that she had her in the office because she had "hit 2 kids".  She said "she hit 2 kids, well, not hit, she was actually just swinging her arms and accidentally hit two kids while doing that".  I get that hitting kids no matter how it is done is wrong but they had her escorted from the playground and yelled at her in the office.  For accidentally swinging her arms into 2 kids??  I told them I appreciate them telling her that is wrong but shouldn't the lesson be that you need to be more aware of your surroundings and not punishment for "fighting" (fighting was the word they used on the slip they sent home that I refused to sign until it was fixed).  They said they agree it is not fighting but had to deal with her in such.  And who was at the center of it all?  Her lovely teacher.  After speaking to the principal I was told I need to make another conference (this would be the second one) with the teacher to talk.  When I went to her classroom she was so rude and disrespectful toward me.  I decided that was enough.  I would not be getting anywhere with this lady.  I promptly waked to the office, explained my feelings and asked that she be transferred to another class.  I was met with such hostility, refusal to help me or my child and then it got worse.  I had been on my facebook page (which is private) and had told of the situation to ask my friends how to deal with this.  Little did I know that one of my "friends" loved this teacher and decided to call her to let her know I was bullying her online and saying horrible things about her.  The funny thing is, I was only explaining what had happened to my 6 year old child and if that is taken as "saying horrible things", then maybe the teacher should not be doing these horrible things.  The school was upset that I would do such a thing to this teacher.  Are you kidding me?  She is bullying my child, not the other way around.  After a week of absence and numerous talks with the super intendant, we finally got her transferred to another class.  It was not without them letting me know how cruel I am and how it is the child, not the teacher who has done wrong and that will be proven when she starts her new class and nothing changes.  Well, it has been a week and I feel like pointing out that her week has been fabulous.  Her teacher is amazing, she absolutely loves my child and vice versa.  She has had nothing but nice things to say and one time she said them in the presence of the other teacher who stood arms crossed with a pissed off look on her face. 

I think ti is ridiculous that schools are supposed to be a safe place for kids to go and yet hey allow people like this women to bully them and hurt them emotionally.  They were so quick to defend this woman even hen I had written statements from other parents who had gone through the same thing.  Shouldn't they be protecting the child and making sure they are in a safe learning environment?  It is truly heart breaking because I am sure this is not the only school this is happening in.  And why is it that the parent is made to feel like crap when they decide to stand up for their child?  Isn't that my job?  I think we should have more parents standing up and not sitting on the side lines, maybe then people will realize this is not ok.

My rant is over and there has been a lot of stress taken off of my heavy shoulders.  I would like to thank all of my friends who took the time to call or write me and let me know that what I was doing was great and to keep my head up and push forward.  This was starting to break me and your kind words, prayers and love sent my way was definitely felt and accepted.  A good friend of mine write to me after I mentioned how "life sucks", she said "life does not suck, it is beautiful, situations suck", that has stuck in my head and even though I did it before, I now like to drive and look around at the beauty of this life and be thankful for all that I have.

Birthday Celebration

Yesterday my middle girl turned 6.

 I could go into the typical "how did it go by this fast? I don't understand how she is 6 already!", we all have that thought, my main thought was "how have I not had a kid party for her in all of her 6 years?"  I have never had a kid party for her and I feel like a lame mom.  Granted, we have had kids at our parties, but they were mainly family and some friends with their kids parties.  This year she asked specifically to have kids from her class for her party.  We normally do parties here at the house too and while they are not cheap, I feel like I have gotten off easy.  I looked at these other places, the fun bouncy house places, arcade places, anything and holy cow, they are pricey!!!  One place even had the nerve to have a letter before entering their website that said something along the lines of "how much do you care for your child?  Do you want to have a cheap party somewhere else and make them feel inadequate or do you want to pay the $ and do it with us? Show them how much you really care, click the link to enter our site"  WHAT?  This is just ludicrous!  I realize parties are not cheap but to spend almost $1,000 on just the place seems ridiculous to me.  That being said, we eventually found our place......Farrell's.  I am not sure if you are familiar with Farrell's or not but it is a restaurant that specializes in ice cream, huge ice cream sundaes and it is loud and kid friendly.  They set up balloons and banners, kids play games and win prizes and the birthday songs are loud, obnoxious..........and I couldn't help but want to get down to each and every one of them (yes, my kids have THAT mom, some are too young to be embarrassed just yet but they will get there).  While the place was a little disorganized (they didn't realize we were a party after seating us, even though we had checked in as a party and reserved the place weeks in advance), the kids still had a great time. 

(See these girls?  Only one is mine and the other 2, not related!  Proof a "real kid party" went down)

 

 

This sundae was called the "birthday sundae", it looks like a mini sundae compared to the other sundaes they make, this could be a topping to their other sundaes!  All in all, it was loud and obnoxious but it was fun and my girl is still talking about how fun her birthday was.  She ended the night sleeping in her new play house she received from a friend, she said it was her own little apartment in the living room.  And with that, our birthdays are all done for the year, no more planning and stressing........until Christmas that is (yikes!).

 

 

Wedding and the dreaded back to school ickies

Last weekend I had the honor of being my friends Maid Of Honor in her wedding.  The wedding took place in Santa Barbara, CA which is just unbelievably gorgeous!  Butterfly Beach is a long strip of sand and rock but in one small area, there is this beautiful old tree with a little patch of grass.  It all looks out over the ocean and is just breathtaking.  Add the setting sun and the night was just perfect!

I have know the beautiful bride since we were in high school.  It has been so much fun to be by her side as she planned her wedding.  And I must say, we still look good 12 years later :)

 

After coming back, one of my kiddos got sick.  Hers was not so bad and I thought we had escaped the dreaded back to school cold until this weekend when my oldest caught it and it is 100 times worse than the other ones was.  I don't think it helps that my oldests immune system is not as strong as others.  But, with some rest and homemade soup (I don't care if it was 95 outside, soup always helps when you are sick :/) we are pulling through.  We better all be nice and healthy, a little birdie told me that in less than a week, this one will be turning a year older :)

 

 

Aaaaannnnddddd I'm Back!!!!!!

Life seems to get crazy and when you don't have a working computer, blogging really is not a priority.  I tried to blog from my iPhone but as you can see, the pictures really are crazy huge and editing on the iPhone is limited.  After getting another computer and not blogging for so long, I completely forgot about it until a friend of mine mentioned catching up and reading my blog :/  So, memory of my blog has been triggered and I am officially back.  A lot has happened in a short amount of time so I guess I will give quick updates.

 

 

Cassidy is doing really well.  She just started 5th grade, I still don't feel old enough to have a child in 5th grade (my wrinkles are starting to make me feel old enough though).  Her seizures are under control and we are currently in talks with her neurologist to possibly start taking her off of her meds.  We are taking her off of one now as we speak because it is not needed since she is taking the other and if she stays seizure free, she may be growing out of them.  This sends up huge warning flags for me and I have tons of questions but I guess we will cross that bridge when we get to it.  Other than that she is just your typical 10 year old girl and by that I mean completely sassy and wanting nothing to do with her completely embarrassing mother :)

 

 

This one is beyond sassy (not much has changed really) and keeps me on my toes.  She started 1st grade and loves being back in school and playing with friends.  She now has an Ipod and you can catch her rockin out as much as possible, she is turning 6 soon and wants to donate clothes and toys to kids who don't have any.  Her heart is amazing, she recently donated her hair to Locks Of Love (obviously the picture above is older), I sat in the chair blubbering as it was cut off but I have to say, short hair suits her sassy attitude!!!!!  We shall see what year 6 brings with her but I am sure it just adds a bit more sass.

 

 

And then we have her (sigh), moms don't have favorites because each kid is special and unique in their own way but this one just gets me all the time.  I know it is because she is my youngest and I am trying like hell to hold on to anything baby she may still have about her.  I don't know what i will do when she goes to school, except maybe cry into my tub of bon bons while I watch home movies.  She is just the epitome of a little girl and wants to be anywhere I am, it truly melts my heart!!!!

 

 

 

You didn't think you were getting away without looking at this ugly mug we you?  Here is an update on where I am at.  I had a fantastic job, I was signing a lease soon on an apartment for the girls and I am planning my new future as a single mom.  Then my boss let me know he was closing his business, which left me jobless, unable to sign the lease and having to stay here.  I have been completely miserable, I think having a future and having it all pulled out from under you can definitely throw you off but I also know it is a huge sign that that is not where I was supposed to be.  So, I have had to suck it up and live under the same roof with my soon to be ex husband (huge eye roll, sorry, I may be a little bitter and try real hard to put my fake smile one when I say that).  I am going to be enrolling in a phlebotomy program that starts in October and by mid November I should be certified and able to apply for work.  It is not my dream job but it will get me out of my current situation and I can provide for my girls.  Not to say I don't like it, I think it will be a good job and I will like interacting with others.  I am pretty excited.  The only thing I am nervous about is being the old lady in the class, I definitely do not want to be the old lady!!!!!

 

So, that is a quick check up with all of us.  I hope to keep this thing updated and have some fun stuff on here soon.  Thank you for being patient with me as I try to get my life back on track!!!!!!

 



Fit For A Princess

My little one turns 3 this week and to distract me from my sorrows that my kids will not stop growing, we had a party. Not just any party, a Pink Princess Party. Pink pom-poms and streamers hung from the ceiling and jars of candy lined the bar. Friends and family gathered and I think that was best if all. I always feel like I need to be everywhere at once and hope everyone is having a good time and I live the moments when I can stand back and see everyone who came because they love my girl. She told me this was the best party ever and was quickly off to dreamland as soon as her head hit the pillow, a true sign that it was indeed the best party ever!! Thanks to everyone for coming out, we loved having you here and I hope the day was just as good as ours was!!

These Days Are Numbered

I am actively seeking employment but until I do land that job, I am enjoying these days because they are indeed numbered! Today I took my youngest to the mall, we had to get a birthday present and were looking for her perfect Princess dress for her upcoming Princess party. We had a fantastic time, I tried on some clothes and she told me I was pretty, we ate lunch at a Cafe and shared a cookie for desert. My little one saw the Easter bunny from the upstairs balcony and screamed "hi Easter Bunny!!!!!!", he looked right at her, waved and blew a kiss, this blew her mind!! She squealed and yelled that this was indeed the best day ever. But she didn't want to keep it all to herself, she decided that she wanted to get some chocolates for her sisters, how could I say no to such generosity. I watched her walk all proud with a Disney bag in one hand and chocolates in the other and was on awe. I have an amazing little girl and have felt blessed that I have had this time up spend with her. It will be hard going back to work and not having my days with just her, so for now I am completely enjoying them!

Planning A Princess Party

I have always said I would be one of those parents who kept their kids birthdays low key so they don't get too spoiled. I feel I have done that so far, the girls choose what they want to do and we do it but it has never been over the top. My youngest turns 3 in a couple of weeks and today I asked what she wanted, it was simple....a pink princess party. Easy enough right? Easy enough until you start searching for ideas on Pinterest!!!! So many adorable, fun things, how on earth do I choose? She would be fine with it being simple but I want to rock this party!!! I am slowly turning into the mom who throws mega parties, either that or I am bored and need to get out more :) Look how cute this stuff is though!!

Dental Adventures

When I was growing up, my mom never had dental insurance. Well, she did once and I had a filling put in but then we stopped going. I have since been and have plenty of work needing to be done in my mouth, it seems never ending. I am excited that my kids are able to go and not wait like I have had to. However, it is so expensive!!!! My amazing sister-in-law said it best, dental insurance is less like insurance and more like a coupon. This is so very true. My oldest is at the age now that we have started to see an orthodontist. And yes, we are talking braces. She still needs to wait for those so for now they are installing an expander for her overbite. Apparently the bone that sits right below your nose does not fuse together until the age of 12 so they can put in this expander and slowly crank it open over the course of a year. It separates the bone to widen the mouth and the bone will then fuse together later giving less of an overbite. Step 1 is spacers, tiny little blue things stuck between her teeth apparently holding the space where the metal spacers will go in a couple of weeks. As expensive as this us turning out to be, I am pretty excited that my girl has an opportunity to get the gorgeous smile I never got. And as nervous as she is, she is pretty excited too!!!!

Job

You hear all the time how hard it is to get a job in this economy but I don't think any one truly ever realizes that until they are actually looking for one. I have my cupcake business and my new job making fabulous purses for LexiWynn, but neither us enough to solely support me and my kids. So, I am looking for a job and it isn't easy. Without a great degree and tons of experience, no one wants you or are willing to pay the amount if money I need to make. It us super frustrating, but at the same time, I know things will work out and my girls and I will be ok. Until then, you can find me here, doing this........

Vegas!

Last week I turned 30. I never thought of myself as the person who freaks out at getting older but this time, I did. Not just because I am officially out of my twenties but I feel lost, starting all over at this age freaks me out. I know I am in no way "old" but starting a new life at this age can make you feel this way. So, to get my mind off things, I went away to Vegas with some friends and family. We had this planned for quite some time and I was extremely happy to get away for the weekend. We all had a great time and I will never forget it. I was also able to see my friend who moved out there last year, if was do nice seeing her!!! I cannot wait to make our yearly trip again next year or maybe I will have to go again before then :)

Yay!!!!!

Hello blogging world, I am back. Here's the deal, our laptop hook a dive a while ago. I had planned on buying a new one and then for Christmas, my mom bought me a sweet tablet. I thought all would be well but it turns out, blogger hates my tablet and refused to let me do anything. I eventually gave up, I guess I could live without blogging. I was mainly sad about my cupcake blog, what good is an online business without a website? I recently bought an iPhone and thought I could blog from there but yet again, no such luck. Then, as I was laying in bed last night, almost asleep, my eyes popped open and I had an epiphany......app!!! There is an app for everything and yes, there is a blogging app!!!!! I am elated, not that blogging is my life but not bring able to blog my cupcakes had stressed me out some. So, here I am, I hope some people have stuck by me and still read this!!!!! I will be updating as much as I can. Here is a most recent family picture for starters, enjoy :)

The Makings Of A Great Friend

Years ago I had a woman come into my life.  We were thrown into a situation that had us working side by side and it eventually turned into a friendship. This woman and her family have become very close to my heart and my children adore them. They have helped me through some of the toughest times in my life and I will forever be grateful. They also have children who are around the same ages as mine. Her oldest daughter had always amazed me. Her personality shined above everyone else and she had the sweetest heart. I have always thought this but the conversation I had on the phone the other day just did it for me, this girl is amazing.

In school, this girls class read a story about a kid with a disability. They were then asked to write about someone they knew who had a disability. She chose to write about my Cassidy. She said she felt bad that there was some things that she could not do but the one thing that she was the best at, was being a good friend. Are you kidding me?! I cry even writing it out now. This girl is 10. To have a kind heart at that age, the world is in for a treat with this amazing girl. Not enough? Here is another example of her kindness. Sometimes my girl has to wear sunglasses inside in order to protect her from flashing lights so that she does not have a seizure. She was wearing them one day during lunch and some kids started making fun of her. Her friend saw this happening, gathered a couple more girls and came up to my daughter and told her how cool her glasses were and if there was a problem. She ended up eating lunch with her and it just made my girls day. When I told her of what recently happened, my girl broke into tears. She said she misses her friend (i forgot to mention they moved away this year), and that she is the best friend she has.

This girl is amazing. The compassion she has for others and the courage she has to stand up for what is right amazes me. I know a lot of adults who would not have the nerve to do this. I think this also shows the great parenting going on within the walls of their home. She may have been born with a heart of gold but it is also learned through the generosity and compassion her parents have as well. The world would be a much better place if we were all a little more like this sweet girl. Why not tell the girl at the store how much you like her hair or how pretty her eyes are? Why not help someone in need when they are clearly being picked on. I really believe that good things happen to those who show love towards others. I think if we all decide to do at least one random act of kindness per day, the world would feel much sweeter!!!!!

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!!!!! 

Absence Makes The Heart Grow Fonder

I guess in this case, absence is completely annoying.  I apologize for now fully posting lately.  My computer is down and blogging is a little difficult without one.  I will be posting some more Epilepsy stories featuring amazing people.  Until then, please know I am not gone for good, just taking a mini break.

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!!!!



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!!!!!