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!

The Dog Days of Summer

Our summer started off quite interesting, with a huge four day road trip. It only got more interesting. Again, we are never boring! More details to come on the little boy, but here is a little tidbit on Slugger.

One night, Brian noticed that Slugger was unusually thirsty. He thought he must just be hot, he is covered in fur after all!

The next morning, Slugger once again went straight for his water bowl and drank like he had been in the desert. Again, must just be hot-it has been 100 degrees in the shade, plus humidity around here. He ate his breakfast and went to the bathroom, so he must be fine.

We noticed that Slugger was kind of mopey and was laying in corners that he did not usually frequent. However, no real extreme markers that something was wrong. Then he had an accident downstairs. That has not happened since we first brought him home! In the commotion, we learned from our nurse that he had thrown up in the house the night before while Brian and I were out at Costco (recent version of a hot date). That would have been good information! So we know that Slugger is not feeling like himself. I keep him close and watch him.

As the day goes on, he is still somewhat sluggish but will come when called and has been outside. Dinnertime rolls around and he refused to eat. MAJOR red flag! This dog is totally motivated by food. Usually he practically inhales his dinner. In training, we were even told, "If Slugger doesn't eat, you know something is wrong". I went over and started to examine him. Since we are working on bonding and I do not touch Slugger, I did not notice that his abdomen was distended earlier. I felt and it was tight and bloated. I was praying that his stomach had not flipped and knew that we had to go to the hospital. I hoped that it was just bloat, but had no idea what he could have eaten. Brian got home and Slugger and I headed to the Pet ER. Cole was super worried and anxious about where I was taking him. He has never really been away from him, especially at night.

I do like the facility. They make it seem like a posh hotel with couches, nice rugs, arm chairs and art every where. They even have oncologists, neurologists, opthamologists, internal medicine doctors, etc here...for pets! The desk is super long with all of the departments, but we wanted this one.
We checked in and got set up in a room. Slugger was very obedient, but I could tell he was miserable. They took him right back for x-rays and then we had to just hurry up and wait. We hung out in the nicely appointed room while we waited for results. They came back and asked me if I was missing a loaf of bread. What?! The doctor actually said it is quite common. Slugger has been naughty recently and has been eating things that have been on the floor, but I don't think that a dog without opposable thumbs could open my fridge :) His food is in a locked bin in the garage and anything he gets is strictly monitored. One cup, twice a day and only gets treats from Cole or when he is tracking or for seizure alert. I don't think that he could have eaten a huge amount of anything without me knowing!
The x-rays did not show any metal, that is good. Plus, his stomach was in the right position, also good...it was just 3 times its normal size! I saw the films and it was indeed, "Remarkable and absolutely incredible" as the doctor kept saying. Slugger's stomach was so bloated that it had pushed his intestines and colon clear back in to the rear of his body. I would have never really known, had I not felt his stomach. Now I have a kid AND a dog who will not whine or cry when they are in pain. The x-ray could not show exactly what he ate, it just looked like "granular material" aka food. Sluggie is known for loving plastic, but it did not seem like there was any hard object in there, that they could see. I can't wait for technology to be able to just peek inside our bodies without having to cut us open. SO-no emergency surgery for Slugger. Relief! They took him back and gave him huge amounts of IV fluid, so he looked like a hunchback. The doctor wanted to keep him overnight since he would have to go out multiple times to relieve himself of all of that stuff in his stomach. He might throw up and have diarrhea. There was heavy medication on board to help get things moving. I told him that I was not scared of bodily fluids and that we could handle it at our house if he didn't think there was any other reason to keep him. ;) I knew that Cole would be anxious without his buddy and dollar signs were flashing in my head at an overnight stay. So, they set us up for a follow up x-ray the next morning, wished us luck and we were on our way! Slugger almost puked in the car on the way home, but held it in. I had the windows down and was driving as fast as I could without breaking the law just trying to get him home. He must have had nausea like a first-trimester pregnant woman. I laid out a sheet for Slugger and kept him in my room, taking him out multiple times that night. When Cole woke up, he was so happy to have his Sluggie back!

We went back for the follow up x-ray and his stomach was empty. We will never know what he ate, there is no evidence that is was anything abnormal. I am just glad he is okay. All of my boys keep me on my toes! I feel like Ellie from UP with my fist in the air and screaming, "Adventure is out there!" Come and find it at our house :)

Slugger's Story

I first heard about seizure alert dogs from my grandmother, who had seen a program on television about them. It turned out that they were really expensive and agencies only gave them to adults who had lots of seizures. My epilepsy was fairly controlled at the time. We never really talked about it again.

Fast forward-I went to college and this same grandmother mentioned that I should get a service dog to live with me. At this point, the internet was up and running so I did a search. There was not a lot of information out there. The more I thought about it though, why would I want a dog with me all of the time? I was having a hard enough time talking about my seizure disorder to potential friends and prospects. Taking a dog with me everywhere was like pasting a sign on my forehead that said, "She's different!" At this point in my life I was trying to prove my independence and fit in, not stand out.

Fast forward, again-I became a social worker and decided that I wanted to apply for a service dog that I could take to work with me, to help my patients. As a bonus it could live with me, and maybe alert to seizures. I sent in my application and was told the waiting list was 5-7 years.

Time moved on and things changed. I never reached the top of the waiting list since I was rarely having seizures and there were others that "had a greater need". I understood that, but wasn't that what a waiting list was all about? I resigned myself to the fact that I would probably never be able to get a dog to help people I worked with and to possibly help me.

Cole came along and I started thinking about service dogs before we even got his Dravet diagnosis. I called 6 different agencies, and not one of them would place a seizure alert dog with a child under 5 years old. I was so frustrated. I wasn't sure if Cole was going to make it to age 5 (sad, but true). I went to the Dravet conference and saw multiple service dogs there. One person that I made friends with had just finished fundraising for her son, who was the same age as Cole, through 4 Paws for Ability. I had seen their website during my search, but they were in Ohio. I lived in Utah. I had not really delved into their mission. She explained to me about the fundraising and that they could place a dog with my son. That was all I needed.

I came home from that conference with an overwhelmed feeling, having just caught a glimpse of my future. I did, however, have a fresh resolve to get the very best for my son. I single handedly organized a fundraiser and I was not going to look back. To learn more about that part of our story, go back to the fall of 2010 in our archives.

We raised our money, got approved and had to hurry up and wait. Turns out that we had to wait longer than anticipated, but Slugger was worth every tear shed and every day that I thought, "I could really use that dog right about now!"

We finally got to meet our furry family member in October 2011 at 4 Paws for Ability. There is a lot of emotion that I still feel, 9 months later when I think of that day and this video.

We gained many friends through our 4 Paws journey and had a wonderful, tiring time at training. If you want to read about our time at training, click here

Life with Slugger has not been easy. It is really like bringing another baby into the family-one that sheds! All of that training, all of those commands have now become second nature. There are still bumps in the road, but he truly is the perfect dog for Cole. He is so patient and has the perfect personality to fit in with us.

To those of you who are thinking about getting a service dog, I say-Do it. It will not be easy, but the rewards that you get are a totally worth it. Slugger has brought so much to our family.
So even though he does dumb things sometimes and there are days when I wish that I could shave him, he is my baby's best friend and guardian angel here on earth. I would not have it any other way.

Plan A, B and C

I will start when we almost went to the hospital, before we went to the hospital.

We woke up early the morning after and packed into the car, heading down to see our personal rockstar, Dr Miller. Got Cole all hooked up.

All he wanted was to hold the board they strap babies on to when they put on their leads. Okay?

When we finally got settled in our room, all Cole cared about was the electronics and the magic keyboard. Are you surprised?

Since Cole had a fever, we gave him Tylenol, which curbed his small seizures (we find this is the case) and so he did not perform very well during the beginning of his Video EEG. As it wore off and he got tired of being poked, prodded and examined...the myoclonics joined the party and we had plenty of data. I have mentioned more than once that I have a disdain for EEG's. Willing your child to have seizures is such a backwards experience. You spend their whole life wishing that they will be healthy and strong, then you get them all hooked up and hope that they just seize away so doctors can capture data. You are armed with a button, ready to push at the slightest hint of activity. Turns out, I was 100% right at capturing seizures if I was looking at Cole. Only had a less than 10% error rate, which were probably attributed to blinking/drowsiness that we attributed as eye flutters. He had a great myoclonic cluster that lasted over an hour and a half. When the resident heard it had been that long, he came in and gave me a stiff lecture about how we should call him if we think Cole is seizing. Uh, do you want to take a seat? We'll be here all night.

These people could not fathom that we were not giving him heavy drugs to stop the small seizures. Eventually, I asked for something, they didn't get it fast enough and so I went to my own stash...I got in trouble again. Seriously, they wanted to give him 10mg of Diastat for myoclonics. I finally got them to compromise at 5mg. I appreciate doctors and modern medicine, but more is not more when it comes to drugs. Why use 10, when 2.5 will work? Every time we use benzo's, there are side effects. I know Cole well enough to realize that little seizures, just need little drugs. Big seizures need big drugs. Glad that I don't take it personally any more. I used to beat myself up after I would hear that we were doing things wrong, from doctors who had never met us or didn't even know our son. Now, I know that we know our son best. What works for us, is what we are going to do. Thank goodness Dr Miller is on board with this. Eventually we got an EEG that looked like he was drunk, since he had the Diastat.

They really should make pediatric hospital beds, bigger...since the majority of the time they have a parent in there with them.

We made the employees look far and wide for "the car". Cole knows that when he is in the hospital, they have cars. It is part of his in-patient routine. Miami only has 2 cars for the entire hospital and they are in the playrooms. We need to get one donated to the neuro unit. The boy freaked out for an hour after he woke up from his seizure induced sleep, because all he wanted was a car.

Slugger was a celebrity and people kept stopping by to visit him. When Brian would take him outside he would get accosted on his way there and back, by families who wanted them to visit their room. Every one was certain they were volunteers :)

SO-results are that Cole is having 200-400 small seizures a day. This is compared to 70-100 a day last year, when we thought things were bad. Oh, Dravet...why do you have to keep proving to us that things can always get worse. It truly is laughable how nervous we have been along the way and now we look back on those days and laugh. Dravet has truly taught us the power of the human will and the strength that you can find in yourself when you feel like you have absolutely nothing left to give. I remember that trip we took in 2009 and how freaking scared we were to cross the Nevada desert, that something might happen. This was before drops, before photosensitivity, before temperature issues...before a lot of things. We look back on those few days and how absolutely precious they were. We spent an entire day at the beach and nothing happened. That little trip with just the three of us will never be possible again. We will attempt something like it, sure. But this time armed with oxygen, a bag of rescue meds, a cooling vest, FL-41 lenses and a seizure alert dog...and maybe we will stay for an hour.

I like to talk to Dr Miller about Plan A, Plan B and Plan C, since we know that most things don't work out for Cole. It is not being pessimistic, it is just being realistic. I want to know what the next step is, with his help. Right now, the first step was to increase Cole's Keppra. He has been on it a long time, when he misses a dose he has a seizure, so we know it is working. It is one of the safest anti-epileptic drugs on the market, not being broken down in the liver like most of the others. So, to make up for his height and weight change for the last year, we re-calculated his dose to be almost exactly what he was on previously, but took into account the changes his body has made. We found out in FL that Cole has grown two inches since December. I knew his feet, but wow-no wonder I keep finding clothes that fit yesterday don't fit today. Plan A-change the Keppra dose, with this we also changed it to three times a day, hoping to get rid of that early evening hump we have been having trouble with. So thankful for technology, that phone of mine reminds me every day at 2:00 that it is Keppra time. I have to pack a syringe that is pre-drawn into his lunch box if he is going to school.

Plan B-Add Bromide. Cole has failed Phenobarbitol, Depakote, Topamax and Clonazepam. He has 7 seizure types and is progressively getting worse. The doctors definitely classify him as complicated and intractable. So, Bromide is an "End of the road" drug that we are willing to give a shot. The only one really left is Stiripentol and we are not ready for that yet. We don't have the money.

Plan C-Look at something that we have tried in the past, with a different dose or combination. We really don't want to get to Plan C.

Here's to hoping that Plan A and B work out!

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.

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.

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!