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.

Appearances Can Be Deceiving

Doesn't this look like a great family snapshot? The White House in the background, Cole petting Slugger. Cute, right?

What you don't see....Cole is actually hitting Slugger (once again, he gets the world's most patient dog award). Cole is screaming at the top of his lungs. My child is barefoot, because he has actually taken off his shoes to throw them at onlookers (including his parents) and has even reached down to retrieve them from under the stroller, so he can lob them again. Remember those cute orange Sperry's? Now they are weapons.

Let me take you back a couple of hours, or days perhaps.

We scored tickets to the White House Spring Garden Tour. Got excited. Made plans for it to be a date, with another couple we know. Oooh, grown up, normal stuff!  Still have no nursing on Saturday's, so decided that this was the day to do a trial run with a friend who is willing to learn how to take care of Cole. With a lot of coordination, we are set. Saturday approaches and things are not going so great. Also, weather is not cooperating and it is supposed to be over 80 degrees. Add in our lovely friend humidity who has come back to haunt us, and Saturday's weather is not looking good at all for Cole to be outside. Long story short, knowing full well that Cole was going to have issues if he was outside, I could not feel good about sending him on his maiden voyage to another person's house, they had soccer games. We decided to still go to the tour, after much debate, since we had made a commitment to others and who knows if we will get tickets next year-that is way too far away.  Let's be brave!  Our semi-romantic date turned into a family affair.

We end up procuring two extra tickets, so the other couple brings their son also. Great! We give Cole a little Valium and we head off. As we arrive, right as we get out of the car, Slugger alerts-big time. He is putting his head under Cole's legs and nudging him so hard, they are flailing. He nuzzles my elbow, he nuzzles Brian's elbow, he nuzzles the stroller. He licks Cole. The picture was clear. Seizure on the horizon. So, what do we do? We are with other people...they drove. I give Cole more Valium knowing full well it will make "Angry Elf" come out. With the benzo's in his system, without a seizure yet to break through...he gets really behaviorally challenged.  Sometimes he gets hyper, other times just plain angry.  What are you going to do? Screaming child vs seizing child. There is not a lot of choice.  Heat, overstimulation, being strapped in the stroller, already having a bad week and a major alert from Slugger-he needs the meds or we are going to have major issues.

Slugger did awesome and is still waiting to hear back about a play date with Bo.  I took his picture on the grass, even though there were signs to keep off of it.  I'm a rebel.

Wherever we went, Cole continued to scream.  He threw the iPad, his cup, anything we gave him basically, on the ground.  While Brian and I attempted to take pictures, he was trying to rip the sunshade off of his stroller, or was bucking so hard he almost tipped it over.  At least the other family could find us...just follow the high-pitched wails! :)

It was an adventure!  I am glad we went though.  A year ago, I would have never attempted the crowds, or being outside.  I have a very thick skin, so the annoying on-lookers who were shooting daggers out of their eyes and had a conversation bubble floating above their head that said something to the effect of "Why can't she control her child?" or "How dare they bring that boy here!  It's the White House, not a playground!", they didn't really bother me.  The grounds were lovely and it was one of those, "Never thought I would be here" moments.  Without the screaming and hitting, of course.

With the extra meds, Cole did not have a big seizure.  He calmed down once we got away from the overstimulation and crowds and we went on our merry way back home.  We told our companions-"Hey, if you are going to hang with us, you've got to be able to take the heat!"  They did great-home run.

So while I got to see the presidential putting green and the first family's secluded swimming pool, I am reminded that our life will never be simple.  Just looking at pictures though...you would never guess.

An Illustrated Guide To The Week: 2

Word on the street is that you liked the last "week in pictures" post. I promise, one of these days my comments are going to be fixed and you can all leave little replies under each post. Right now, it is looking like sometime in July..yikes! If only I were cool enough to crack html codes and figure it out myself. Alas, I have no skills in that area. Until then, keep posting on Facebook and talking to me IRL.

Saturday:

What 3 hour status seizure? Cole was up and at 'em, fixed the lawnmower with Dad and you would never know that he was in ICU less than 48 hours before. This child continues to amaze me. It takes me days to recover from a 10 minute seizure. Cue, "Eye Of The Tiger"

Sunday: 

Our agency pulled our nurse to another case, while she was on her way to our house. I was...upset.

Cole has been going through a gigantic growth spurt. His feet have grown two whole sizes since starting school in August. He now wears an 11...I think I wore an 11 in 3rd grade..he is 4 years old! I believe all of the growth charts that predict he will be over 6' 5". Need to work out some more so I can have hope of lifting that! I got him some super cute orange Sperry's at Nordstrom Rack on mega sale. I hope that they last more than 3 months! We had the missionaries and some friends over for dinner. Sunday, other than the nursing issue, was lovely.

Monday:

I did not send Cole to school since his teacher was sick and that meant germs could be hiding out in the classroom. I went to my usual Monday morning routine with three of the cutest little kids ever. Then, after I got home, we did average little kid stuff! It was hot, but we armed ourselves with the cooling vest (our new one should be here soon!), hat (that is also too small), Fl-41 glasses and set off on a nature hike with friends. Cole loved scooping up moss and sticks in his net and looking for "creatures". It was short and sweet, little over an hour, but hey-a true play date! THAT does not happen very often.  We come home and Cole starts having LOTS of little seizures.  Including 5 drop seizures, which have been in hiding for over two years.  I got nauseous and anxious just thinking about going back to the days of the helmet and having him within arms reach at all times.  I quite enjoy using the restroom by myself every once in a while, thanks.  He hit his head on a chair on the way down and got a gigantic bump right where there used to be a permanent one from all of his falls

Tuesday:

I knew that traffic was going to be awful on the way to therapy.  We drive right by Dulles Airport and I had already seen lots of posts on Facebook, etc that the roads were extremely slow.  Why?  The Space Shuttle Discovery was piggybacked on a huge aircraft and circling the D.C. area, then landing at Dulles before going to its new home at the Air and Space Museum.  We left early, since it usually takes us an hour to get out there.  We actually got to see the shuttle TWICE!  Once while it was circling, and then we were right by the airport when it landed.  This is an awful picture, but I pulled off the side of the road with hundreds of other cars and tried to take it with my phone.  It was so amazing to see how little it looked in the sky and then bigger and bigger on its final approach.  It was right above our heads at one point and I just couldn't help but think of my family. I am married to someone who grew up on the Space Coast and could be defined as a space geek. Plus, our brother-in-law worked for NASA for 15 years.  He had personally put his hands on Discovery many, many times.  We have seen Discovery in the hangar and Atlantis and Endeavour on the launch pad at Kennnedy Space Center during an employee Open House in 2009.  I will never forget how gigantic they are, and how patriotic I felt.  In fact, looking at all of the pictures again makes me want to do another post about the experience.  I will refrain! Here are a couple of pics from that trip :)

A true piece of American History has retired.

Wednesday:

Wednesday was, kind of, a normal day.  I sent Cole to school, he was fine except for all of these myoclonics that have been coming full force this week.   Have not seen any more drop seizures at this point.  I exercised for the first time in a week and still can't walk correctly a few days later.  I really should know better than to do an hour of squats and jog/walk for a half hour.  I was watching Breakfast At Tiffany's on my laptop in prep for an event this weekend and was thinking I was so cool for multi-tasking. Ouch.  I couldn't stop looking at our new photos and can't wait to share them with you on the blog.  All in due time.  For right now, enjoy this one-if it doesn't make you smile, I don't know what will!  Cole was still having lots of myo's and we gave him rescue meds twice on Wednesday to stop the cycles.  He woke up 3 times in the night, for extended periods.  He always wakes due to seizure activity, but this time he stayed up.  Weirdest thing ever, he asked for food at 4 am.  Seriously?  This is a kid who hardly ever eats, let alone asks for food.  He wanted a quesadilla.  So-he ate an entire quesadilla around 4:30 and then went back to bed.  SO strange.

Thursday:

I could hardly sleep on Wednesday night, never mind that Cole was up and down the whole time.  I had a huge meeting with the school district Medical Review Board.  This meeting is to approve nursing for school hours.  Bottom line-if Cole doesn't have a nurse, he doesn't go to school.  So-big deal for us.  Last year, I came out of this meeting and cried in my car.  The board had told me that I was going to have to homeschool Cole because he was too complicated.  Low and behold, the warrior in me came out and I fought multiple battles and won!  This time, I actually had the principal and Cole's teacher with me, on my side.  I can't describe how good it felt to have the principal of his school stand and say to the board, "I would be extremely disappointed as a professional, if you do not make this happen".  She went to bat for Slugger and Cole, so did his teacher.  It. was. epic.  I started to cry (not my forte.  I rarely cry anyway, and never in meetings!), I was so overwhelmed with emotion and admiration for these two ladies who have helped to change our life.  The majority of Cole's class is sick, so I kept him home.  His teacher came to the house and finished the end-of-year testing before we have his IEP next week.  It was great to get to talk to her one-on-one for an extended period of time.  I (sometimes) miss being in her classroom every day.  There were multiple times during the testing that my eyes got big and there was disbelief all over my face when I heard and saw Cole's answers.  He truly amazes me and has come so far in so many ways since starting school.  For example, one question is-"what do you do when you are tired?".  Cole answered "Go to sleep!"  I was thrilled!  His answer for that particular question last time was a blank stare and running off to play with toys.  He is still really behind on some things, but other areas he is almost to age appropriate, Hooray!  During the testing and in the hours after, I saw more eye flutters than he has ever had in one day.  That, coupled with increased myoclonic jerks, I knew he wasn't doing well.  Slugger alerted and I just thought it was for the clusters.  I was wrong.

Around 8:00, the boy I nanny was picked up after staying later than usual.  I was exhausted.  Took Advil for my sore muscles and a throbbing headache and went upstairs to take a hot bath while Brian got Cole ready for bed.  I had just shut the water off and was settling in when I heard, "Nik?!  Can you come down here?"  I sighed, then went into action.  Cole lost his urine at the onset, which is not normal.  He started with a right sided complex partial, which generalized.  His fists were clenched, also not normal.  His breathing was really junky and we thought he might aspirate.  I really think it is time for portable suction in this house.  We called the paramedics because it had been over 20 minutes and no sign of slowing down even with 17.5 mg of Diastat and 3 mg of Versed.  It is always fun to run around, get dressed and pack a hospital bag while you are simultaneously trying to keep tabs on what is happening with your child.  Cole finally stopped seizing after 30+ minutes, right as Brian was carrying him out to the ambulance.  Glad I didn't send him to school, or there would have been issues there, I am certain of it.  Adrenaline made certain that I was not going to have that peaceful slumber that I craved.  Our neighbors and friends know that we are never boring. 

Friday:

After the meeting on Thursday, I picked up this beauty at a thrift store.  The bell won my heart.  Not bad for a thrift find-only $19.99, versus $70 for one like it at Wal-Mart.  We don't know how well he will do on it, and I am certain that he is not going to be able to figure out the brakes.  Homeboy's gigantic legs are just too long for his tricycle though and he needed something else.  Riding a bike takes a lot of core strength and coordination, so we are hoping that he will get a lot of physical therapy from it.  So far, he has just run into a lot of walls :)  Hopefully, the rest of today is uneventful.  I do not have a nurse for 6 days, since my main one is on vacation and the agency can't seem to find a replacement.  Bother!

I am going to the White House Spring Garden Tour tomorrow afternoon and Gourmet Club in the evening.  So looking forward to having a moment or two to myself.  Then again, Dravet could throw me a curve ball and interrupt the best laid plans.  Oh, well!  We will come back fighting.  Always.

Post-Ictal Blindness and Photosensitivity

I actually wrote this the morning before Cole had his post-ictal blindness spell last week. Talk about ca-razy!
_____________________
After having spoken to numerous doctors about Cole's condition, none of them have actually seen a patient who has experienced post-ictal blindness. They have only "heard about it".

Cole has experienced this phenomenon multiple times. He will not be able to see, even after coming out of a post-ictal sleep. The longest it has lasted is two and a half hours. The first couple of times it happened, we were extremely nervous. A number of things can happen during a seizure and we were afraid that he had lost his sight permanently. We now know that is not the case.

We usually know that he is blind when he does not react at all to an oxygen mask coming towards his face-he hates oxygen. He will not be able to focus, track objects and will not flinch if you bring objects rapidly towards his face, such as your hand. He will continue to be blind, even after he has regained function in all other body parts.

This does not happen after every seizure. However, it has happened enough to be classified as "normal". Normal for Cole :)

We had a thorough examination of his eye done under anesthesia, by an Opthamalogist. The structure of his eye is fine, the blindness is totally related to his neurological condition.

We feel that his occipital lobe is extremely involved during theses seizures and possibly damaged. This would also give reasoning for his photosensitivity to light and patterns. His FL-41 lenses help.

So, if your child ever seems like they are blind during a seizure and it continues long after their normal post-ictal period, know that it is rare...but possible. I would suggest adding an Opthamolgist to your long list of doctors. If your child has Dravet, they are probably photosensitive. I would highly suggest looking in to FL-41 lenses. We order ours from the Moran Eye Center in Salt Lake City, UT.

Feature

As Warriors is becoming more popular with the Special Needs crowd, we have been featured a couple of times on other blogs and I have been a guest writer.

Some of the articles have been pulled straight from my blog posts. The "How To" series for Disney, special needs kids and service dogs, have been really popular. You can see an example here.

I have also started writing for sepcialneeds.com
Here and here are a couple of my articles.

It has been a lot of fun and I have a lot of other articles on the horizon!
If you ever want to link to posts I have written or have me as a guest writer, just e-mail me! epilepsy warriors (at) gmail (dot) com

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!

One Of The Shortest ICU Stays In History

Make sure you read this first, so you know what is going on ;)

We got to the ER and the doctors did not believe at first that Cole was seizing. Non-convulsive status is so tricky! I read the chart and it said "admitted for seizure?? Patient arrives to room breathing, crying, no obvious seizure activity and color normal".

Pretty quick, they caught on that I knew what I was talking about (with some help from Dr Miller) and went through the process of trying to get that blasted enemy of ours-an IV, in him. They finally got one right above his ankle. They gave him a bolus dose of IV Versed and prepared a drip. Dr Miller let them know that I wasn't crazy, he was probably still seizing and suggested Depakote, but I told the staff I wanted Versed. They listened to me! Awesome.

Slugger alerted me a FOURTH time. So I knew something must still be happening. I can't believe him-Cole still smelled like a seizure! I have had two big alerts in one day, but that was after we had given Cole a bath and washed the seizure smell off. I was in awe of Slugger! We were admitted to the PICU and got an EEG (with some Fentanyl) just to make sure that he was not still seizing. By the time they hooked him up, he had already "choked" (aka vomited), which is our signal that it is over. This entire status episode lasted over 3 hours.

There are a few things that I learned/re-learned yesterday:
*As much as Slugger does stupid stuff like chewing up an iPad charger (thank goodness it wasn't plugged in) I am SO, SO, SO grateful for this dog. He has changed our life so much and he is my baby's guardian angel.
*Dr Miller is a rockstar. He answered when our ER (in a different state) called, he told them what he thought they should do AND gave them his cellphone number.

*Act like you own the place (nicely) and you can get things to happen a lot faster.

*I LOVE our local hospital. Yeah, we have had some not-so-nice experiences with hospitals. I love Miami. However, I have never been to their ER. I will say this, I wondered about being admitted, since we have not been on the floor yet at this hospital-but it was the same throughout! We have frequented the ER, but the PICU was just as great! No one wants to be in the hospital, but it sure helps when you have an excellent, friendly staff that is willing to listen to you and get you out of there as soon as possible.

*Slugger is such a comfort to Cole. Plus he makes a really great pillow.
*My Mini-Hulk is so strong! He can withstand crazy amounts of drugs and pain. Here he is, sitting up, talking to everyone when he has 2.5 mg of diazepam, 3 regular doses (about 4.5 mg) and a huge bolus dose of Versed, 10 mg of Diastat, and Fentayl in him. Mercy, that would knock most people out for 48 hours. He is up running around, acting like nothing ever happened. I remember though.*Our new tradition when we are in the hospital is Cafe Rio. Even Cole participates.

EEG basically looks like he is drunk, because he is! A little bit of myoclonic activity here and there, but that is normal.

*EEG glue is one of the banes of my existence.
*I don't think that anyone has been admitted to the PICU at 6 and is out by 10 (alive). This is including an EEG. I told them in the ER I wanted to be out of there as soon as possible, since Cole always leaves a hospital sicker than when he came in. He is talented at picking up whatever is floating in the air. They listened! Epic Awesomeness!
*My boy will knock the socks off of any medical staff. They all waved good-bye, said they wished he had stayed because he was so cute. He waved, smiled, and walked himself right out of there. You would have never known he was on the brink of death a few hours earlier.*Crisis separates the sheep from the goats.
*Even that special shampoo cap will not remove the EEG glue. Oh, wait...I already said it was the bane of my existence. Cole's too.
We are home and taking it easy. The up/down, hot/cold of it all is exhausting to a parent. Cole-you would never know. He is talking about being a rockstar and pulling Sluggie's tail. Just another day in our life!

Open Mouth, Insert Foot

And I was just saying how well we were doing....

Cole has had a couple of weird days. I mean, weird. It all started with an increase in myoclonics. OK, we know Dravet changes all of the time, we roll with it. Monday was still Spring Break, Tuesday was therapy, so Wednesday was his first day back in school in two weeks. I decided to do something good for myself. The last few weeks have kind of wore me out. Low and behold, Dravet wanted to remind me that I can not go anywhere within a two mile radius. It doesn't matter what I am doing-the beast is always there. By the time I got to the school, 35 minutes after the relatively short seizure, you would have NEVER known that something had been wrong with Cole. He was slurring his words a little with the Versed in his system, but he was sitting at the table doing a puzzle, talking up a storm. Plus, Slugger alerted 45 minutes before! This is his 4th consistent alert 45 minutes ahead, so we think that is his "window". Cole did not seem any worse for the wear, Slugger had done his job...it was all good. Well, good as it can be after a seizure. I packed up the boys and took them home. Cole continued to have lots of myoclonics, which is once again, weird. Usually after we give him Versed, he is good for a couple of hours at least. I go to the dentist (hooray! I might need another root canal). Cole continues to cluster, so they give him more meds. He wakes up twice in the middle of the night.

Thursday rolls around, Cole wakes early, that is fine. We have a wheelchair evaluation and I was going to get him up anyway. Wheelchair guy comes, gets the little man all measured. Cole is doing awesome, hardly any myo's and they are spread apart. So, I send him to school! As this is my first true day at home in weeks, I finish up a post for next week (you will find out how de ja vu it is later), do laundry, catch up with my DVR simultaneously and clean a little for a couple of hours. Then I get a call from the nurse. She lets me know what is happening and that Cole is fine. I jump in the car and head over-much quicker when I am 2 blocks away. Nurse tells me that Cole was having so many myoclonics that she gave him a small amount of diazepam in his g-tube. About 3 minutes later he started to have a full-blown tonic-clonic. She gives him Versed. It stops quick, she calls me.

By the time I got there, he was loopy, but talking. Nurse tells me that Slugger got off of his place twice, then had a light bulb moment that he was trying to alert. This is her first time alone with Slugger during a big seizure, so she is still getting used to alerting. She also said that Cole kept on trying to go over and lay with Slugger. This is good! I talk to her some more, give Slugger lots of treats for being a good boy. Check out Cole more thoroughly. I notice he is blind. Oh, great. Then as I pull him on to my lap, I notice his left leg is jerking. He is not done! He has a complex-partial seizure, I give him more Versed. The whole time his oxygen is going up and down. Leg stops. So I think we are out of the woods and try to settle him down (he hates Versed with a passion). Slugger alerts, again. Okay? Still blind. 5 minutes have gone by (almost an hour since the whole thing started). He goes stiff, then limp. I notice his eyes are not just deviated anymore they are actively twitching and moving back and forth rapidly. Geezo! So, we give him Diastat. At this point, he has had myoclonic, tonic-clonic, atypical absence, complex partial and tonic seizures...within an hour. Our personal protocol is to go to the ER after 4 doses of rescue meds. I get to the point where I feel he is stable and I situate him in the wheelchair to get him to the car. Slugger then alerts for a THIRD time, and he will not back down. He is putting his head under Cole's legs, nuzzling him like crazy, licking his hands because he can't reach his face, nuzzling my elbows and practically tries to jump into Cole's lap. Alright buddy, I get the picture. We are going to the hospital. Cole started to drool in the car and got goosebumps, so I knew that he was still seizing. We headed to the ER.

This is getting to be the world's longest post, so I will break it up!
Cole and Slugger in the ER trauma bay

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!

Easter Dravet Video

Our friend from New Zealand made this video. Cole and Slugger make an appearance near the middle.

Jill's House

A couple of years ago, a family friend called me and told me about an incredible place called Jill's House. She mentioned that she was certain that Jill had what Cole did, but doctors could not find out what was wrong with her. I looked the place up, but it was clear across the country. It seemed like an incredible facility. I tried to contact the founders, to ask them if their daughter had ever been tested for Dravet, but I think my e-mail got lost in the shuffle.

Lo and behold, years passed and come to find out, Jill got a diagnosis of Dravet, right after her doctor attended a conference and sat next to me at dinner. Then we moved across the country, right into the area that Jill's House serves. Coincidence? Probably not.

I finally got to go and tour Jill's House when they held a get-together for Dravet parents before the National Walk for Epilepsy. It is completely state of the art! I was so impressed with these people who wanted to give back to their community. We even got to meet Jill! She liked Slugger :)
To learn more about Jill's House and their mission, go here. They have a gym, indoor pool, sensory rooms, an incredible covered outdoor playground, computer rooms and much more!

This is one of the activity rooms. All decked out like a stage!

The kids went crazy over this sensory room, climbing everywhere!

I want a Serenity Corner (aka padded, windowless room) in my house! Seriously. It even had a hook to put a sensory swing in the middle.

All of the rooms were designed so well to fit special needs kids. Including the bathrooms.
There were beautiful murals everywhere! Reminded me of Miami Childrens Hospital.

It was so nice to see some of our friends and to meet some new ones!Some of us had dinner afterwards. It is hard to explain how wonderful it is to have a meal with other Dravet families. It is controlled chaos, but no one cares! It is one of the strangest family reunions you could attend, but I wish we could have them all of the time :) This is as close as we got to taking a family picture!
I can't wait until Cole turns 6 and can take advantage of Jill's House. The best news? It is covered by his Medicaid Waiver-he can go FOR. FREE. Once a month! The staff there have really made it accessible to all sorts of kids. They hold a medical conference before your visit and try to have the same nurses every time, so your child gets used to them. They want it to become the new "going to grandma's". They have a long list of volunteers and try to also match their special skills and personalities to your child's. These people could take care of Cole (and Slugger) and he would feel like he was on vacation! It will be such a wonderful experience for him, and us. If you live in the greater D.C. area and have a child with special needs-check out Jill's House for respite. They have even served people from outside our area while the rest of the family enjoys what D.C. has to offer. I strongly encourage you to look at their website. They are looking to build more of these across the country!