Surrounded By Greatness

I have never really been star struck. I can have a conversation with a CEO or a governor and I won't get nervous. I remember being nervous the first time I met Dr. Dravet. She just represents so much emotion in my life. This year was much better ;)I love that this conference not only gives you the opportunity to connect with other families, but with incredible doctors; who could end up helping you in the future.
The consultations are incredible and you have the chance to have one on one time with the best doctors in the world...without having to pay a dime! I try to tell everyone that you are entitled to a second opinion, and a third and a fourth. You are the best advocate for your child and should totally trust your doctor and treatment plan.I had the opportunity to once again share meals with these people and get to know them outside of their offices. It was something that really impressed me at the first conference.
We had the opportunity to hear from doctors around the world with the magic of the internet. There were presentations from Italy and Australia, even though the doctors were not physically present. We can give each other feedback and spur ideas for new research and treatments. It also gives us the opportunity to laugh. I made Dr Miller laugh more than once with a recount of our summer. See, even he thinks we are never boring ;)

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!

Bromide

We started Potassium Bromide a few weeks ago. This is a medication that is considered "old school". It was used for hundreds of years, but fell out of doctor's circulation when bigger and better Anti-Epileptic Drugs (AEDs) came along. It is still widely used by veterinarians, to treat dogs with epilepsy.

Since Cole is severely intractable (hard to treat) our treatment team is at a crossroads where we are ready to use out-of-the-box treatments. Bromide takes a very long time to reach therapeutic level, about three months. We are going extremely slow since Cole is so sensitive and Bromide has an incredible half life. It stays in the system for weeks, versus hours like other drugs. You can not get it at your local pharmacy. We have been using a compound pharmacy that is out of state to make it for us.

So far, it has been good. Potassium Bromide is a salt, so it dissolves well in warm water and is easy to push through Cole's g-tube. We will just have to be patient and see if it makes a difference. We are really looking to decrease myoclonics, since he is still having on average 400 a day.

One concern was that Bromide can interact with chlorine and patients are cautioned to stay away from chlorinated water. However, there is no research to back this up, just hearsay from an organic chemist who is certain that the reaction between chlorine and bromide would cause an effect similar to the bends in SCUBA diving. Our doctor gave us all of the necessary precautions and warnings. Us being us...we tried it out in lots of different environments. We poured three capsules in the pool, waiting for effervescence. We tried a cap in the hot tub, to see if increased temperature would cause the bubbles. We called vets and asked if they had ever heard of cautioning pet owners to keep their animals away from pool. Their opinions and alll of our tests turned up negative. We then decided to not totally submerge Cole and took him to our local splash pad.
He had a good time testing our hypothesis!
No problems. We showed the pictures to his doctor and he laughed. Apparently, we have proved ourselves. We always keep a close eye on Cole anyway when he is swimming. I am just glad that we didn't have to take something else that he loves away from him.

We also started Prevacid, after finding that his upper GI series revealed he is having reflux, which could be the reason for his gagging all of the time. Since starting both of these medications, Cole's seizure control has been better. The Bromide is certainly not therapeutic yet, and Prevacid is certainly not an AED. Who knows?! I am just grateful that it seems like we have broken out of the cycle of needing rescue meds every day.

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 ;)

Dentist

We took Cole to the dentist for the first time! Based on recommendations online, I chose a dentist that was known for doing well with special needs patients. The office was beautiful and had a lot of distractions for kids. The staff was wonderful and we really liked the doctor.Cole loved getting to blow up gloves with the air. It took him a while to settle down even though there was a magnificent dragon coming out of the wall and he is obsessed with dragons (and underwater creatures) lately. They were extremely accommodating and Cole did not cry.
The doctor was not worried about his two teeth that have ground down during seizure activity. She said to worry only if we see a visible nerve.

We go back in 6 months!

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!

Lighten Up

Kids, it seems like it has been downright depressing around Warriors lately. I'm sorry it has been a little towards the dark side. Yes, it has been rough lately and it seems like our universe is revolving around seizures, but we still find time to laugh and do semi-normal stuff. Because who ever said we were trying to be normal :)

Things like making Bacon Cheddar Scones three times in two weeks. Um, maybe this is why my pants don't fit? I curse my friend for introducing me to them.Things like trying a new, matte color and trying to prove to myself that red lipstick is a state of mind. Hey, maybe if I can rock it in Target I can rock it on date night.

Or having doggie family reunions after another marathon doctor's appointment. The bone health clinic is SO not on my good list. Slugger was so happy to play with his sister, Samba.
Welcome to DC, where ghetto gas stations are the norm. They didn't even try duct tape, just went for plain old clear packing tape to hold it together. Apparently, the owners were not raised on a farm, or they would have done it right the first time. *wink, wink*

We will try to take a little time each day to lighten up. You should too ;)

Dr Niki's Report

There have been questions about clarifying Brian's injuries. My Emmy screen play was really not clear enough and I tried to not make him look foolish. Yard work can be dangerous ;) It was more about how crazy our day was. I am glad though that so many of you have asked about him.

He finished cutting up the tree. Then he got attacked by a great white shark that came out of nowhere!

OK....so maybe, not a shark. But that would be an awesome story and one that my dad would totally tell ;)

He has 14 small puncture wounds on one leg, right by his knee, from a shark tooth hand saw. I will spare you pictures. There really was the blood, the almost fainting, the banging on the door, the seizures. I told you, no one could make this stuff up. He has a nice limp and we are watching it for infection. AND he will probably continue to live up to his reputation of not being very "handy". Hey, the man has many other talents.

You know that you can always tune in for more! We usually like to be a comedy, but lately it has been a drama kind of series. Coming up this week-Cole finally gets his wheelchair that I ordered in April. We head back to the bone specialist and Cole's first trip to the dentist. Gonna be a nail biter! haha

In good news: It is 11:00 pm and Cole did not have a major seizure today! Plenty of small ones, but hey...we will take what we can get! It has been 5 weeks with only 4 days that we did not need rescue meds. We can only hope that he is turning a corner.

The Day We Should Have Won An Emmy

Category: Best Drama

No, really...we had an episode of ER in our living room. Also, Dear Lisa-be prepared to laugh.

Set the scene-After a torrential storm that left millions without power, the streets are strewn with carnage from the trees that are plentiful. A house down the street has a hundred year old oak in their garage. The family car is ruined. (side note: *cough* the storm was four weeks ago, but we are being dramatic here :) back to the story) The father, we'll call him Brian, goes out to the yard to survey the damage and finds part of the fence has fallen down and there is a 20 foot limb that graciously left his family unscathed in his back yard. He heads out with a shark tooth hand saw, to make the clean up more manageable.

The sexy, intelligent wife, Niki (Hey-I can be dramatic too!) starts to clean the inside of the home. Keeping watch over their child, who wants nothing more than to be out with his father. She has to run outside to bring him back, twice. She carries him in, saying that it is just too hot for him. So she locks the door to put one more barrier in between him and the outdoors.

She goes about her work and suddenly hears a desperate pounding on the door and screams from the outside.

Brian: Open it! Hurry!

Niki: I'm coming! I'm coming!

She sees blood streaming down his legs, gushing between his fingers. Has a brief flashback of an incident where her father accidentally cuts his face open with a chainsaw.

Unlocks the door and throws it open. Brian staggers into her arms. She leads him to a seat in the kitchen.

Niki: Breathe! Just settle down and breathe.

Brian's head lolls to the side and snaps back up. He moans.

Brian: slurring-I'm okay.

She grabs towels and removes his hand to see that there are multiple small cuts. There is blood all over her hands. She applies pressure and tries to slow the bleeding. Knowing that her husband is prone to fainting at the sight of blood, especially his own, she tries to keep him talking.

Niki: Stay with me!

Brian's eyes roll back in his head, his face is ghastly white and his breathing is fast. There is a noise in the background.

Brian: He is seizing!

Niki has to make a decision, lead her husband to the floor in case he passes out, or run. She chooses to run.

Brian: Slurring-I am okay. Get him.

Niki runs to her son who is having a seizure and scoops him up. She races to another level of the home where the oxygen is located. His face is blue. She tries to wipe her bloody hands on her pants. As she attends to the seizing child she continues to try and talk to Brian, who is on a different floor, making sure he is conscious. The only response she gets is moaning from above. She sets the little boy up with a pulse oximeter and prepares rescue medication. She chooses not to use it, since it looks as if the seizure is going to stop on its own. The seizure lasts for an agonizing 4 minutes. As she attends to the child, her extensive training is guiding her instincts and she is calm and efficient. After it stops, she makes sure he is okay, lays him on his trusty Service dog and runs upstairs to check on her husband.

Niki: You okay? Just don't look at it.

Brian: I almost passed out.

Niki: I know. Just hold this here okay?

She runs back down to the child, who is conscious and asking to watch television. He seems to have incredible strength and tries to stand. He wants to see his dad. She carries him back upstairs and situates him on a sofa, out of sight of the carnage in the kitchen.

Niki doctors Brian's leg, that is so sweaty it is hard to get a bandage on it. There are multiple small, shallow cuts and he will not need stitches. The cuts are starting to clot, so the bleeding is slowing, mingling with the sweat. Even wiping it down with a cloth is not enough to properly get a bandage on. She asks if he can stand and he nods. She leads him upstairs to the bathroom. She grabs the child, calls the dog and situates them on the floor. She proceeds to help bathe her wobbly husband whose color has returned. After the water drains, she doctors the leg again and helps him out and into the bedroom. She places the child on the bed while Brian dresses.

Niki: *sigh* We all just need to take a break. *laughs*

Pan out-Return to scene of Niki three hours later eating stale cheesecake and watching the Olympics.

Brian: *from a distance* NIK!

Acknowledging the cry, she runs into action.

Niki: Seriously? Again?!

She runs downstairs to find the child seizing yet again, this time harder and longer. Oxygen dips, the child is blind. Meds are administered...twice. There is tension in the air, but the team is efficient. They even work with the dog, commanding him, training him to bark and rewarding him with hot dogs.

Brian: This one is bad.

She nods her head and agrees.

Niki: Poor kid.
Mommy's here. I'm here sweetie. I'm going to help make it better.

The two work together as a great team. Brian runs back and forth for various things. After ten minutes, the seizure stops, rendering the child drooling profusely and unable to speak for an hour afterwards. The parents attend to the child who remarkably has great motor skill control.

Niki's stale cheesecake decides to attack her digestive system and she clutches her stomach, runs into the bathroom and shuts the door.
Close scene.

Open on lights going out in the house. Scan every one going to bed after hugs. Their faces look hopeful for a better day tomorrow.

Music plays in the background. Fade out.

No one could make this stuff up.

Going For Gold

In the spirit of competition, Cole has decided that he wants to be the first in line and the best at everything. Even if that includes things like requiring his mother to call 911 and not get any more than 5 hours of sleep per night.

He is a champion, a warrior, much like the athletes in the Olympics. His story is more like those that qualify and are just happy to have the chance to be there. Not expecting to make the podium, but reveling in the experience.

We have kind of been like the gymnast that falls on their behind. Get up, wave and smile...and do it again.

This year has been wild, but the summer has just taken it to a whole new level. This child has needed rescue meds, every day. Even if I try to hold off and let the myoclonics just work themselves out, there is a tonic-clonic, or a complex-partial. Even though some of these facial complex-partials are resolving before I can get there with the meds, the "aftershocks" last for hours. Cole is always trying to be different. His brain is always trying to be the star. Seizures will leave you more exhausted than any workout.

Last week, I called 911 twice in 3 days. That has not happened in I don't know how long.For the sake of record keeping, which has totally fallen by the wayside: Cole went to the ER, after a 30 minute non-convulsive status seizure, with a 103.5 temp, even on Tylenol. He had been having fevers for a couple of days, but for him...that's normal! There were no other signs of illness. It is so hard to tell if Cole is sick, because he does not feel pain the way we do and he never complains. I have no idea if he is hurt, I just have to guess. The doctor said he MIGHT have an ear infection, but with a temp that high, ears just naturally turn red. They put him on amoxicillin, which he has had before and sent us home after his fever went down. That was technically Sunday morning.Warning:don't become friends with us unless you can handle an emergency phone call at 2:00 in the morning :) Thanks, S!

Monday, he broke out in a rash and it spread head to toe. It was not an allergic reaction, but a summer stomach virus. Had nothing to do with the anti-biotic. His ears are fine. Fun! Now the virus has taken up residence in his g-tube site and is causing all sorts of drama.

I have not been keeping score because honestly I would just be sitting with a notebook all day making tally marks. Statistics are dismal right now. SO-record keeping over.

There are times when I think that Cole is trying to make seizing an Olympic sport and he wants to stand on the top of the podium, proving he is the best at it. So many types! So many lengths! Different times, world records! He is a star :) I would hold him up there, but honestly this is not an event anyone should have to medal in.

However, we still have our champion of our hearts and his winning smile.and that is better than any gold medal.