It Is Getting Closer!

The anticipation is building for our Make A Wish trip!

The wish granters threw Cole a little party to help him get excited.  We invited a few people that have helped him along the way.  His teacher, therapists, doctor and some other important people came.  We had such a good time.

 They brought balloons, Cole's favorite!  The others knew him so well that a lot of them brought bubbles.  Cole thinks that if we are having a party, it must be his birthday.  So they obliged and brought him presents!  We are so lucky to have these special people in our life.

 The weather was just right and we got to be outside for a little bit.  Cole had a wonderful day.  We totally paid for it that night with 3 big seizures, but the party was great.

Cole really doesn't understand anticipation.  He is very much in the moment and black or white.  I have been talking non-stop about our trip to him and he is just in the frame of mind where he thinks, "Well why aren't we there already?"  He does not understand that we are going for him.  That he will get special treatment.  He thinks he rules the world anyway! ;)  He will parrot back when I ask "Where are we going on an airplane?"  "TO SEE MICKEY MOUSE!"

It seems like I can't find pictures of Slugger and his sister.  They are too funny when they are together.  It is like Wrestle Mania and they totally forget that they are service dogs.  We are so lucky to live close.

My friend helped me make this adorable bunting banner with her awesome Silhouette Cameo.  That thing is amazing!  My house is so dark you can't see it very well, but the font is the perfect iconic Disney lettering.  So much fun!  I am actually glad that I don't have a craft budget.  I think if I had this machine, it could be a real time consumer.  I would just think of parties to have so I could create projects! ;)

Cole loves to paint so he helped me make this Mickey head topiary.  It has glitter on it, cause the boy loves him some glitter!  I can't help it.  I do too!  The red paper on the banner is glitter paper.  We like things that are sparkly.

We are so excited to make Cole's dreams come true.  He has been on a super high dose of steroids to help him out while we are in Florida.  So far, there has not been a big change.  We are hoping that the timing is just right and he gets a break while we are there.  Here's to hoping!  Maybe the steroids will act just like the high dose antibiotics, maybe they won't.  We just want Cole to have as great of a time as possible.

I had some custom Thank You notes made.  We want to make sure that we show gratitude to everyone that has helped us on our journey.  This Make A Wish trip is a once in a lifetime dream come true and every one that had a part to play in it big or small needs recognition.  Plus it was another excuse to use some gorgeous pictures of my boys.  For those of you who are wondering, I used Pinhole Press.  I wanted something affordable and easy to manage.  These custom notepads were perfect!  This way, Cole can just rip off a page and give it to whoever helps him along the way.  There have been plenty of helpers and I am sure that there will be more on our trip!

Only a few more days to go!

Purple Pictures 2013

We had another outpouring of support for International Purple Day this year!  Friends from all over the world showed Cole and I love by wearing purple and talking about Epilepsy.   Even celebrities like the Cake Boss got into it!  His niece, who is also his god daughter, has Epilepsy.

Cole and Slugger struggled with taking a picture

We had little kids from all different places (some that live all the way in Japan!)

 People who are related to us

 People who don't even know us

and people that we haven't seen for a long time.

People who are related to us in our hearts

 and people who are really dedicated to our cause, whether we see them all of the time or not

(I just realized that you are in here twice, E!  Lucky you!!)

 We loved seeing everything purple from headband and beanies to toe nail polish and even

Grandpa's black/purple eye from a Dodgeball match

 We know that there are a lot of our friends out there that struggle with all kinds of things

but for just one day, it was so beautiful to see people around the world come together

and do something as easy as wearing purple 

to show their support for people who have Epilepsy

 We loved seeing you on Facebook and Instagram
Sorry if I didn't post your picture

We can't wait for next year!

Purple Power

IRL

Welcome to the first in a series of VERY picture heavy posts.It is always great to meet with my Dravet friends "In Real Life". Some have been friends for years, others this is our first interaction.
All are special. These are some of the people who can read me like a book.
Some of the people who cheer/roar for us when we accomplish even minor things.
Or understand my twisted sense of humor, because most of them have the exact same dose of sarcasm.Some come from far away places-We had people from Australia, Austria, Ireland, Israel, Mexico, Cyprus, England, Africa, a crazy big group from Canada and other countries represented this year!
Some are from your backyard. Some are so sweet that you want to pack them up and take them home with you.
The children especially leave huge marks on your heart. I love these two.
Some have an alarming amount in common with you.
But with all of them...you feel a whole lot of love. This is my favorite part of the conference. Making connections. The internet is awesome, but I will always prefer to "friend" someone IRL.

DSD4

Home from the Dravet Syndrome Spectrum Disorders 4 Biennial Conference! I have been working for months and months to prepare for this and I was so busy the entire time. I am so glad that we got the opportunity to participate in something that we are passionate about.

When I was deciding what to pack, I had to conclude that I have a severe addiction to stripes. It might be hereditary.I spent a lot of time putting together these bags for the families and doctors. Special shout out to my amazing committee!I even had Dr Dravet herself sign my book! Can you believe that she didn't have a copy? I was pleased to be the person to present her with a copy of her own book. It was amazing that we were able to give these to every family.
She is not a fan of getting her picture taken. I got a better photo later on in the week. So much happened! We saw old friends, made new ones and learned a lot. I will need to break it all up or the post will be a mile long!

Celebrities

We finally got to meet our friend Evan and his dog, Mindy! They just got home from 4 Paws for Ability. You might recognize Evan from his appearances on Good Morning America, stories in the Washington Post and other publicity based on his book "My Seizure Dog".

I have actually been friend's with Evan's mom for a long time, even before we moved to D.C. We are so happy for Evan and the impact that he has made. Slugger really enjoyed getting to play with Mindy and show her his home turf.We actually met Mindy when she was just a ball of fluff, on the day that she and her brother came to 4 Paws for Ability, while we were there getting Slugger. It was great to see her all grown up and with her special boy. Cole really enjoyed getting to spend time with Evan and showing him all of his toys. We can't wait to see Evan and Mindy again soon!Mindy's television debut was last week on FOX News, you can see it HERE! I teased Evan and told him that we were so lucky to have celebrities at our house ;)

Brotherly Love

We love it when we have a chance to visit Slugger's siblings. Lucky for us, two of them live in the D.C. Metro area. We stopped by and saw his sister, Samba after a doctor's appointment. They really enjoyed running around and Samba's favorite-wrestling!It was hard to get a picture, they were moving so fast! I think it is great that these two still recognize each other. They act completely different than if they were with another dog. Even when Sid's family member came to our house, without him, Slugger acted exactly as he does when he is with Samba or Shaggy. He could totally smell his brother and was really disappointed when he could not find him. He moped for an entire day after his scent left.
We love Samba and her family. Her mom even came all of the way to our house to help me clean. She knew that this summer has been hard and I have been backsliding on housekeeping ;) I really appreciate friends who can read between the lines and who sacrifice their time and energy to serve us.

I can't believe that the S Litter is going to be 2 soon. Time for a party!

Spotlight

I got the chance to be interviewed for an amazing blog: This Little Miggy Stayed Home. Miggy is a true rockstar and I am honored to be a part of her spotlight series! She is an incredible artist, her paintings are beautiful. She has also been featured on design blogs, is a musician and mom to her adorable daughters, Princess Sparkle Pants and Lamp. You might have seen some of her stuff floating around on Pintrest, but her trailblazing with Lamp is what I respect most about her. I have enjoyed her blog for a really long time and we have been trying to do this for a while. So, I will post our conversation over here on Warriors. Go check it out!

FRIDAY, JULY 27, 2012

Special Needs Spotlight: Cole

I am Niki, wife to an amazing man and mom to 2 kids--one human and one very special dog. I am a cardigan addict, love to cook and I have epilepsy. I was a medical social worker in my previous life, but now I have the cutest boss ever, my son Cole. He keeps me busy! Cole has Severe Myoclonic Epilepsy of Infancy (SMEI) or Dravet Syndrome. Dravet (draw-vay...it's French) is rare and only about 1,000 people in the world have been diagnosed with it, though I am certain that there are more out there who have not been properly diagnosed. Cole is one of the rarest of this group, since he has an inherited genetic mutation on his SCN1A gene, from yours truly. Only 5% of SCN1A mutations are inherited. Dravet is one of the worst forms of Intractable (very difficult to control and treat) Epilepsy. Despite his daily struggles, Cole is a happy kid who likes to swim, pretend that he is in a band and loves jumping off of furniture. He adores his service dog, Slugger and goes every where with him. He is ridiculously funny and is always making us laugh. He is my warrior boy. I write about our journey on www.epilepsywarriors.com

***************

Miggy: You have a unique situation (a spotlight first I believe) in that you and your son, Cole, both have epilepsy. Did you know your son would probably have this disease? How did your experience as a kid shape your perspective and fears when it came to your son having it as well?

Niki: This is going to be really hard to condense into the Reader's Digest version! First-I had no idea that I had a genetic form of epilepsy. No one on either side of my family has seizures and all of my tests come back 100% normal. Doctors eventually told me that it was a fluke and that maybe it was caused by birth trauma. I never worried about having children with epilepsy. I am a perfectly mainstream individual who got straight A's, has always been independent and never needed any kind of special assistance. I drive, I worked, I have 3 degrees, I was "normal"...whatever that is :) I had a difficult pregnancy, with some issues that all resolved before I delivered, but we had no idea that there was a problem with Cole. He had awesome APGAR scores and I was infatuated with him from the moment I saw him. He was absolutely perfect in my eyes and for the first 6 months he was meeting all of his milestones. Hindsight is 20/20 and I can see now that there were issues from the beginning, but I was a first time mom and had nothing to compare it to. You can imagine my horror when Cole had his first seizure at 6 months old. I knew exactly what was happening and in the forefront of my mind was, "I did this!" In short, it was a very long road to get his diagnosis and through many tests we have discovered that I have something called Generalized Epilepsy with Febrile Seizures Plus, or GEFS+, and Cole has Dravet Syndrome. Even though we both have an SCN1A mutation, our epilepsy is very different. My experiences growing up with something that no one really understood has definitely made me more empathetic, but has also caused me to grieve a lot. I never really knew I had a disability, but I did know what it was like to be different. Try explaining to your date why you passed out and peed your pants. :) Even though Cole and I look absolutely like anyone else on the street, we are very different. You would never know from initially meeting either one of us, that something was wrong. This has been a blessing and a curse. Over the years it has caused a lot of heartache to realize that even though I turned out to be extremely high functioning and independent, I know that Cole will not. However, doctors told my parents after my first seizure, which lasted 45 minutes, that I would either be, "Severely retarded or dead by morning". That obviously did not happen, so I spent my entire life consciously defying the odds. I know to never place limitations on Cole, because he will prove me wrong every single time. Even though he will need to live with me for his entire life, I know that he can do almost anything, just in his own special way.

Miggy: Tell us a little about your epilepsy, vs. your sons. Are you symptoms and the type of seizures similar? How do you handle this double-duty care?

Niki: Wow...even harder to condense. Like I mentioned above, our epilepsy is very different. At this time, I am seizure-free and have had stretches as long as 3 years where I have not had a seizure. There were periods where it really inhibited me, but at this time, I manage well. Mine always stop on their own, but Cole needs immediate medical assistance for his bigger seizures. Cole's longest stretch seizure-free was 5 months, before his diagnosis. At this time, he is having anywhere from 200-400 small seizures a day. With bigger ones that need medication to stop it about once a day. He has seven different seizure types, where I have only had three and in adulthood I only have one type: tonic-clonics. Cole is constantly seizing, getting ready to seize, or recovering from a seizure, so he has to have someone with him-always. Privacy is a thing of the past in our house. He had to wear a helmet for a while to protect him when he fell constantly. He has Diabetes Insipidus (has to do with your kidneys) and Reflux. He can not feel pain like other people and has literally ran around on a broken foot for two days. He has no awareness of safety. He has been on special diets. He also has dysautonomia and has a lot of issues related to this. He can not control his body temperature, so he needs a cooling vest or lots of layers if he goes outside. Even taking a bath can be enough of a trigger to cause him to seize. He also needs special prescription glasses with special FL-41 lenses in them since he is sensitive to light. He is triggered by noise, new experiences, patterns, weather, textures, the full moon and who knows what else. He gets overstimulated very easily and will have more seizures any time he is agitated. He has spent so much time in the hospital that he has actually said, "We're home!" when we pull in to the parking lot. The paramedics know us by name:) His longest seizure was over 3 hours. There was a time when we actually were homebound for an entire year and a half. We did not go anywhere but the hospital. Even just walking from the house to the car was enough to cause him to have a major seizure.

We ended up moving across the country to get him better care and even though it took us away from every thing we knew, it was the right decision. He has gotten a little better with the light issues, so we try to get out a little more now and maybe we are just getting braver as time goes on. Still, every time we walk out of the door we take a risk; we are armed with a lot of paraphernalia, including a nurse and Slugger, just to take care of him. Sometimes it is weird, little things that we totally can't avoid that get him, like the carpet at our church. So-Cole doesn't go to church. We have to figure stuff like that out through process of elimination and avoid those places. He goes to a special education pre-school after a long battle and I am so proud of him. He loves it and has really come far. We have worked long and hard to give him the best life possible. The most difficult thing about Dravet Syndrome is that it is constantly changing. He is always having new seizure types, new triggers, medications that were once working, stop working. Always something new to try to figure out. We have become great detectives, but sometimes we have absolutely no idea what is causing what. Handling double-duty can be difficult. Cole needs someone who knows him really well and is medically trained to be with him at all times. So, this makes going anywhere really difficult. We can't just call a baby-sitter. I have not slept in the same room as my husband for over 2 1/2 years now since he sometimes has seizures at night and needs someone with him. I know that if I am stressed, have not been sleeping well and have not been eating right, I am setting myself up for a seizure. Show me a special needs mom who doesn't meet all of that criteria! :) I just have to make a really conscious effort to not get burned out and try to take down time every day. Doesn't always happen though-hey, showering is overrated! I truly just try to cherish every day that I have him with me. Seriously, that was the short version! Good questions! :)

Miggy: What are the biggest worries you face for Cole?

Niki: Honestly, I wonder who is going to be able to take care of him. There is a high mortality rate for kids with Dravet, a lot of children die in their sleep, but there is not a lot of research out there since the population is so small. He could live until he is 13, he could live until he is 30. I have no idea. His care is so complex and life-consuming that I worry about who could handle it if something happened to me or my husband.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Niki: Stuff like this happens to us every day. We love to laugh and find humor in our life. A lot of the funny conversations lately revolve around Slugger. People act like we can't hear or see them while they talk about us or don't notice them taking pictures of him. I was orienting a new nurse the other day and had Cole's many medications laid out on the table. Cole picked up the Diastat (a rectal suppository), showed it to her and exclaimed, "This goes in my butt! I just laughed and said, "Yep! It does" and moved on with my orientation.

Miggy: How can people best approach or respond to Cole? Is there something you wish other people knew so as to avoid awkward or hurtful situations? Again, perhaps you have even better insight since you dealt with this as a kid as well.

Niki: I wish that people would take the time to get to know Cole. He is adorable and totally worth the time even though it can seem overwhelming! We, as a family, can be hard to understand since there are so many limitations on what we can/can not do with him. Don't be afraid to ask questions. I would much rather that you ask than come up with your own answers. It won't make me feel awkward. Not a lot of people understand epilepsy, heck-most doctors don't understand it! Don't be afraid to talk about it. It is a part of our life, but it doesn't define us. Also, if you see someone who is having a seizure, or trying to assist some body who is having one, ask if they need help. I know it looks scary, but sometimes they could really use your assistance.

Miggy: What is the biggest lesson you’ve learned since becoming a special

needs mom?

Niki: ALWAYS be flexible. Don't sweat the small stuff.

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A huge thanks to Niki and a yee-haw for the spotlight being back! I have to say, this is another one of those spotlights where I feel like I've just had the glimpse inside the life of a supermom. As all-consuming as Cole's care is, I appreciate Niki's ability to laugh and find the joy in her life--because it is joyful. I think that's one trick to life with special needs kids and one trick to life in general. Thanks again Niki!

As always if you or anyone you know would like to be a part of the special needs spotlight series, please email me at thislittlemigg at gmail dot com. And if you've emailed me and haven't heard back, please be patient--I've still got a day job you know. :)

Have a great weekend.

Return To Oz

Has it really been almost a month since we were there?  Seriously, kids-things have been super crazy around here.

Cole has been sick since May 7th.  Not during cold and flu season, weird with a capital W.  Hasn't been to school more than a couple of days all month, so he isn't catching things from the germ factory aka preschool.  Possibly caught something on the plane, something else at the hospital, something else on the plane...who in the heck knows.

After a round of antibiotics to quell symptoms of concurrent infections-sinus, ear AND eye...he is still ill.  Had a middle of the night seizure for the first time in a year and a half.  Had two major seizures within 6 hours of each other.  More tests, more tests and no answers yet.  SO-with my little adventure last week into the world of blinding migraines and sick Coley, our world has been more chaotic than normal.  Which is to politely say-unhinged.  I know that you were all just on the edge of your seats waiting for my update, right? ;)

I will tell you about it, before I forget the details.  Like how the paparazzi came to the airport and everyone was taking pictures of Slugger.  Or how Cole and Sluggie got invited into the cockpit.

Florida was it's usual self.  Full of stress and serenity.  Prompting lust towards places where palm trees and plumeria thrive.  Silent worship of the waves and their wonder.  I wish that we could live on my in-laws lanai.  We could seriously be okay with being there all day every day.

We saw a lot of this....

Cole had a major seizure almost every single day we were there.  Slugger did not alert for any of them.  He was always ready to come over and do his job of comforting Cole though.  It still chokes me up when my baby starts to wake up and slowly strokes his best friend.  He looks at him like, "Oh, good.  You're here."

I, myself had some undiagnosed issue which I am attributing to a malfunction of my kidneys, as they are prone to break down at the most inopportune times.  I keep trying to send them love notes and tell them that I need them to cooperate, but they continue to refuse to listen.

We actually almost ended up going to the hospital, before we went to the hospital.  Confused?

We called the paramedics, who would have taken us to a new hospital that did not know us and had no idea about Dravet, so they would have admitted us after being in the ER for hours.  Springing the joint in time to take the 3 hour drive to Miami to make our appointment there would have been virtually impossible.  Thank goodness Cole's brain got the memo, just as we were ready to pack him out the door and in to the fun wagon.  Relief doesn't even begin to explain it.

While we were in Florida, Cole started having new presentations with complex partial seizures.  Only his face muscles would convulse, and there were no leader seizures.  He had more tonic-clonics in one week than he has had in years, maybe ever.  He also had ictal vomitting (during seizure, not after like usual) and it is SO scary.  You need to make sure he doesn't aspirate the vomit into his lungs.  His body is not concentrating, as there is an electrical storm in his nervous system.  So, while you are trying to manage his oxygen, keep him safe, stabilize his body temperature, administer meds, etc you are also having to protect his airway and your mother in laws carpet.  Dravet can make a multi-tasker out of the best of them.

I feel like we are the motley crew from the Wizard of Oz, all seeking new and improved things from the Wizard.  In this case, the experts at Miami Childrens.  In the end, the answer is always within us, and we know all along what we need to do (have resiliency and faith).  Sometimes we just need a little help to remember that we can conquer our fears with the right attitude.  A reminder to have courage, use our brains and to have our heart guide us.  Miami is a wild and mysterious place.  The road was not made of yellow brick, but the journey to get there was treacherous.  Each time we go back, I think of the Tin Man, Lion, Scarecrow and Dorothy.  Hopefully we never get picked up by a hurricane, Florida's version of Kansas tornadoes.  We always meet great people aka good witches while we are there, but Dravet is like the Wicked Witches....if I could only figure out how to melt it or smash it with a house.  By the end of the trip, all I want is to get home.  Maybe I should wear red shoes next time? :)

 We did have some fun while we were there in between all of the seizures.  We spent a lot of time in the pool, and eventually we finally made it to the beach.  Slugger was a little wary of the ocean, but got used to it quick.

 We had some good laughs and Brian even got his early Father's Day present.  All he wanted to do was go water skiing...so I finally sent him to a place that every single time we drive by he says, "That would be cool."  This is his way of saying, "I really want to do that."

After almost 6 years, I finally convinced him that it was okay to go and have fun.  Seriously, it is ridiculous trying to get this man to do something for himself.  Pay $25 and a cable will drag you around for an hour, no boat.  Happy husband.  I can't even buy him dinner for that much in D.C.  He had really sore legs the next day, but he said it was totally worth it...with a smile on his face.  Someone even called him "gangster" for skiing when every other single person there had a wakeboard.  He thought that was awesome.  Points for Nik!

We got to see some of our friends, our family and we celebrated Mother's Day.  Even attempted to take the boys to church, but seizures stopped us.  Didn't stop me from attempting to take a picture of my dapper lovelies ;)  

I have a love/hate relationship with Florida right now.  We only go there for an ulterior motive...to seek medical attention. It is a total bonus that our family lives 3 hours away from the best doctors in the country for our son.  So, I love that we get the opportunity to see them a couple of times a year, when it would not be feasible otherwise.  I love the ocean, I hate that I can't really enjoy it when i am there.  I love that we have an awesome team of doctors and we get to meet other Dravet families.  I hate that we have to go so far to do it.  Back and forth, back and forth.

I guess I am kind of like Dorothy running away with Toto to save him.  Claiming that she is doing every thing possible to protect her best friend when others tell her she is dreaming.  However, if she never would have tried to save him from her evil neighbor, she wouldn't have had an incredible adventure.  Cole is my adventure.

DSD 4

I posted this on Facebook, but for the rest of you (lovely lurkers included), I wanted to make sure that you hear the news!


The 4th Biennial Professional and Family Conference for Dravet Spectrum Disorders is coming up in August!  This conference is one of the best things we have ever attended.  This year, it is going to be even more amazing.


An announcement from Joan Vogel Skluzacek-Founder of the IDEA League (now Dravet.org):
The doctors and other speakers who we are inviting to participate as conference faculty are showing remarkable enthusiasm and support for this event this year. Seven clinical epileptologists with special interest and expertise in DS have already agreed to provide small group consultations in addition to giving their talks. Some are going to great effort to work this into their schedules, around their vacations, etc., and they are very willing to volunteer their time and effort to prepare and give their talks and consultations. As a parent and as a Dravet.org volunteer it is very gratifying to get this insight to how much they care and how great their interest and enthusiasm is for doing this work and helping our cause. It is going to be a wonderful conference!


I can not tell you how excited I am about this.  The number of physicians attending has really increased, and this is so wonderful to a community that is relatively small.  It is totally worth the time and travel to meet with these doctors and have them consult on your child's case.  These consultations would cost you thousands of dollars if you met with these physicians at their respective hospitals.  Plus, it also provides them more insight into DSD, helping our future.  I also want to add, getting to know other Dravet families from around the world is amazing.  I would encourage every one, even those who do not have a proper diagnosis, but have this feeling that their child could fit into the category of Dravet Spectrum Disorder or Ion Channelopathy, to try their hardest to attend.  The conference is in Minneapolis, Minnesota this year, August 16-19.  Plus, for those in the U.S. most travel expenses for attending medical conferences are tax deductible-bonus!  Here is the link for registration.  You can even invite your therapists and pediatricians, they can get credit for this conference.


This conference is only held every other year, so do not wait.  It doesn't matter which organization you are affiliated with, this conference helps all of us, and the doctors who treat our children.  We actually attended, last minute, before we even got Cole's proper diagnosis.  I knew in my gut that he had Dravet Syndrome, but the doctors were not on board yet.  You can imagine with my personality, that I went in to it wanting to learn all that I could, if this was going to be our new life.  It can be a little intimidating for newly-diagnosed or undiagnosed parents, but let me tell you this-I am SO glad that we went.  I learned more in two days than I had in hours upon hours, upon hours of looking on the internet for two years.   For those who have had a diagnosis for a while, or have older children, these presentations will not be as much of a shock to the system, more as an education.  I have been in the medical field, professionally, for a long time but I learned things about bone health, genetics and other subjects that I had never learned about at work.  It was here that Brian and I introduced the FL-41 lenses to other parents who had photosensitive children.  It was here that I started giving iPad demonstrations to anyone that would listen, parents and doctors alike.  Some were so impressed by my passion that they wanted to provide iPads for multiple children and now it is a vital part of their charity.  Others found that there was a better alternative to bulky, expensive communication devices they were using.  We were at the conference when we first got to meet families that had seizure alert dogs from 4 Paws for Ability.  It was also the first time that I had really talked to a family that had a service dog (there were 4 there, if I remember-it's been 2 years!).  It was here that I learned about Miami Childrens Hospital, and had lunch with most of the Ion Channel Clinic team.  You know what a blessing Miami has been in our lives, but I was first impressed by their staff at this conference.  It was here that I met Cole's local neurologist, before we moved East, in fact I sat next to him at dinner one night, and also watched him play the piano on another night.  You don't get those kind of opportunities at your regular appointments.


The biggest bonus for Brian and I is the friendships that we have cultivated from attending this conference.  You can read a little bit about my experience at that first conference here.  Hardly a day goes by that I don't have contact with someone who I first met at this conference.  We have found our second family.  We have gone on trips together, vented to each other about things that no one else could truly understand, laughed and applauded each others triumphs and asked each other questions.  It was like going to the magical land of Oz and realizing that everyone else was there to see the wizard too.  We formed an instant, dynamic family of sorts. 


Okay, okay I will stop singing praises.  I think you get the picture:)  If you want more information, e-mail me or private message me on Facebook.  I hope to see a lot of you there, and hope that you can get some answers to your questions.

Animated

In a series of pictures, this is the best one I could get of Cole. His friend, on the other hand, stayed perfectly still and smiled. Keeps me on my toes!

Eggscellent!

We had a lovely Easter. Braving the open road, we were in the car for over 7 hours. Remember this? Just six months ago, being in the car for an hour was too much. Thank you Slugger (Poor dog. He probably had no idea that wearing bunny ears was part of his job description)! I really believe that he has opened up a new world to us.
Cole did awesome and we had a great time with some of our Dravet friends. I hope that we can have another low-key adventure soon!

Don't worry-Dravet has reminded us that it is not going away. Still, we have to enjoy the fun whenever we can!

National Walk For Epilepsy 2012

We have been so busy lately with lots going on. House full of company, Jill's House, the walk, spring break, a road trip...I think I need a vacation! :)

We are so glad that we got to attend this year's National Walk for Epilepsy. There were over 4,000 people there! It was hard to get very good pictures of the crowd, because we had to keep moving. I have never personally been to such a large event based around advocacy. It was moving and I felt myself tearing up multiple times. An absolute sea of people, all with one cause, to bring more awareness.I am grateful that Cole is doing better with handling being outside and overstimulation. We could have never done this last year. We met most of Team Dravet before and walked over to the mall. You can't really see our team t-shirts, they say:

Team Dravet

Brought together by chance. Staying together for a cause.

Even though we live here, we do not go to the mall very often, so it was wonderful to be able to see it in all of its glory-construction included :)

Here is Team Dravet, 2012. We had a great turn out this year and hope to have even more next year! It was hard to stay together, but nice to see purple hats amongst the crowd and spot "family".
Speaking of family, all of Brian's siblings were together for this. Something that does not happen very often. We were so touched that they came to be a part of the walk with us.
We got to see part of another family of ours- 4 Paws for Ability! We walked with dogs Bo and, Slugger's sister, Samba. I am sure there were others there! It was great to see so many service dogs in one spot. I must say though, Slugger was one of the most well behaved dogs I encountered the entire weekend. I was a proud mama!

Showing our hometown pride!

It was a powerful thing to think about each person's story and why they were there.
A lot of people had signs and banners. This was my favorite of the day, from Team Epilepsyadvocate.com. It made me really emotional.
I know that Cole will never be society's definition of normal, but I have to completely prove myself every day. In another time, I would not have been allowed to live independently, marry or raise a family. I was glad to have a team that was there to walk for me too.
Cole gave up about 3/4 of the way through. Even though we gave him meds before it started, there were a lot of people and lots of excitement. Plus, no port-a-potties, seriously, for thousands of people they should have considered that all of the museums would still be closed! :) We did not make it all the way to the finish line. The entire walk was over 2 miles, but we did participate in the majority of it. We finished by a vintage carousel that has been on the mall since the 40's. It was good way for Cole to break away from the crowd.
All in all, it was a great day and we are so glad that it did not rain. Thanks to every one who came! Can't wait for next year!