Spotlight

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

FRIDAY, JULY 27, 2012

Special Needs Spotlight: Cole

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

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

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

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

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

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

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

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

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

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

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

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

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

needs mom?

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

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

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

Have a great weekend.

Guilty Pleasures

Everyone needs an escape.

I am a Mormon, so I do not drink alcohol or do some other things that lots of every day people use as coping mechanisms. I've thought of taking up sky diving, but my darn brain and heart won't cooperate. What is my vice?

You probably would never guess Deadliest Catch. Welcome to my guilty pleasure.

Sometimes I just want to sit back and be entertained. I want to just turn my brain off and get lost in the story. Probably why I love books so much. Totally another escape for me. I have been plowing through other people's stories lately to avoid looking at my own. I can't sleep anyway, so why not stay up lost in a good book?

Back to the Discovery Channel.

Who would have thought that I have been watching a show, from the beginning, about a bunch of crazy's in the middle of the Bering Sea, crab fishing. I know-it doesn't make sense for a thirty-something housewife to be connected to guys who swear like the literal sailors they are, who fight all of the time and smoke like chimneys. Yet, I have been hooked for years and can't wait for each new episode. I cried when Phil died. I congratulated Edgar for wanting to be a better father. I mourned with Jake when his dad went missing, not long after he lost his special needs sister. I love to hate Keith. I wanted to slap Jake H across the face and pack his bags for rehab myself. I love those Hillstrand's and their affinity for blowing things up and playing practical jokes. They are my favorite. I totally am jealous of Wild Bill's hair. I have cheered from my couch when things were good and I have felt a pit in my stomach when I see empty pots. When the Coast Guard has to come, I am practically biting my fingernails. I obviously don't watch it when Cole is around (thank goodness for DVR), and have learned that I can't watch it before bed. Too much drama! Makes for wild dreams. I must say though that the producers of this show are absolutely phenomenal. The cinematography is incredible and the stories that they weave of these men who literally risk their life for the deadliest job out there is something that entertains and moves me.

No Real Housewives of Anything for me. Give me Captain Sig any day.

Things have been stormy on our home front. There have only been 2 days in the last three weeks that Cole has not needed rescue meds for seizures. Small ones, big ones and everything in between. His behavior has been out of control and he has turned into a full-blown bully. We have decided to lower his Keppra, but plain and simple, we are exhausted. I consciously choose every day to not eat my feelings, because I think it would just never end. I can't really have a GNO, so I spent some time on Saturday reading and catching up with my DC episodes on the DVR. Saturday evening we tried to go out to dinner as a family and take a little break. Cole kept saying that he wanted rice and beans, so we headed to Cafe Rio. He had been struggling all day, but then again, he is struggling constantly now. We were prepared, kind of.

As we were pulling out of the driveway, Brian realized that we did not have the oxygen. I said that we wouldn't need it, being optimistic. We ran into a bunch of friends when we came in and I thought, "This is great! We are doing the same, normal thing that every one else is!" Insert foot in mouth. We ended up having to lay Cole out on top of a nearby table, near the end of our meal.

I was actually in the process of meeting my friend's mom when I realized that Cole needed my help. I had to say, "Excuse me" and pick my seizing child up off of the floor like it was an every day occurrence. Oh wait, it is. Working with efficiency that we have perfected over time, we took care of things, with open mouthed onlookers. It was actually the first time that a stranger came right over and asked if I needed help. There have been so many times when I have been alone during seizures in public, or needed assistance when there have just been stares or people rushing away like we were offending them. So-I was grateful for the people who asked if I needed help. I actually had this one under control, but it was nice to know that there are still good people out there. If you see someone trying to take care of somebody who is having a seizure, ask if they need help. They might not, but at least ask! Off my soapbox. Thankfully his O2 stayed in the right range and it was over soon.

When we were on our way home, covered in drool and leftover tortilla, I thought, "When did this become normal?" We try so hard. We always celebrate the victories, but every so often the stacked up failures just get to you. It is like our vessel is covered in ice and we are constantly trying to beat it off, only to be totally iced over again in a few hours. It is back-breaking, tiring work but you get a major pay check in the end. They get millions, I get my little boy. At least I get to sleep in a big bed and don't have to wear 6 layers just to go outside ;)

Changes

WARNING: SEIZURE VIDEO FOOTAGE

Although this is a short video and this particular seizure was over relatively quick compared to others, this is what I have been watching lately. Cole has been seizing day in and day out for the last 10 days, needing rescue meds every day. He has been having different types of seizures at different times of day, totally confusing the heck out of anyone and everyone. Me included.

This new type seems to be here to stay. I admit, there are some pros to it. However, they are fast, and have no leaders. He stays conscious during the majority of them, and only his facial muscles spasm, though usually more of his face is involved than what is shown in this video. I do appreciate that they seem (for the first time ever) to resolve on their own. He also is making noise for the first time ever! Have to find positives somewhere. They are less than 5 minutes, but can make his speech take a hard hit and he can end up having lots of myoclonics for hours afterwards. OR, he can act like nothing ever happened. Seriously, he had one on Thursday morning and we put him on the bus 20 minutes later. Totally fine for the rest of the day.

Or, he could have one like last night, no facial muscles involved, 30 minutes. Or the myoclonic clusters that literally knock him off of his feet. Man, this Syndrome disgusts me. How am I supposed to help my child when I can not understand what in the heck is going on from day to day...or minute to minute for that matter.

Constantly evolving, constantly changing. I should be seeing some beautiful metaphor in here, but I can't come up with one. You all can give it a shot :) For now, I think that I am going to keep scratching my head and trying to do my best.

Our Own Kind Of Independence Day

The 4th of July is my favorite holiday. I love the fireworks, the food and the overall patriotic spirit of the celebration. It is also the weekend of my family reunion, which is something that I really look forward to. There are so many great memories attached to this time of year. My little town where I was raised goes all out with a parade, jets flying over and the party can't be beat...in my eyes.

Cole has never really been able to participate in the festivities, since he was extremely small, 6 months. We have picked and chosen one thing at a time, but never the whole day from beginning to end.

This year, Brian was scheduled to be away and I was left desperate and lonely. Here is my favorite holiday, I know that my family is together, without me. Quality time is my primary love language (feel like you know me just a little better?) and I was stuck with a 4 year old who really could care less if I was around. The pomp and circumstance that can only come with a major holiday was going to have to be cast to the wayside. I even concocted a plan that I was going to drive to Iowa, by myself, with Cole and Slugger; just to be around someone. Brian shot that idea down real quick. Hey, desperate times call for desperate measures, but let's be honest-it was a really stupid idea in the first place. So, as I waved good-bye to my husband I set a mental goal to make this the best darn holiday that I could, even if it meant watching Backyardigans for three days straight. It was all about perspective.

Tuesday was a scorcher and we had been having a major heat wave. There were friends that were still without power, after a major storm knocked it out for millions 5 days earlier, us included. We had our power restored on Saturday. I had planned almost a month ago to go to the beach with some friends of ours on the 3rd. With the incredible heat, we knew it was a bad idea. So, we went over to their house to play. Come to find out, there were a lot of people there seeking respite and air conditioning. A year ago, I would have seen all of those people and just turned right back around and put Cole back in the car. No way. Recipe for disaster.

I decided to give it a shot, and he did great. Had a wonderful time playing with the other kids and only had small clusters of myoclonics. After the play date, they were going to an ice cream parlor. Again, never thought I would be willing to take my kid to a crowded establishment that served ice cream, with a bunch of other kids. BUT, I was feeling wild and said that we would go. They served sugar free vanilla and the boy was fine. He even sat next to another child and did not pull his usual get-on-the-floor-run-away-drive-me-crazy routines that is his common method of operation when trying to be confined to a small space, such as a booth. Holy cow-you mean we did two semi-normal kid things, in one day, with other kids?! I was elated. Kept telling my nurse that I never would have done something like this even a few months ago.

Like I said, feeling brave-we even went swimming, and got Cafe Rio afterwards. Without a nurse or the husband. I was feeling like it was not only America celebrating independence.

The actual 4th rolled around and our church was holding it's annual pancake breakfast. That meant getting Cole up early, which is never really a good idea. I was willing to try though. Got him up and ready, loaded him and Slugger in the car and we went to the church. You might recall that we attempted it last year and struggled. I had my nurse meet me there and even though he was too distracted to eat, Cole had a good time running around with the other kids that he was familiar with. I felt like being wild-so we decided to go to the parade. Yep, a loud and crowded HOT parade. Without the cooling vest, whoops! We set up right in front of the first aid tent, knowing that they had radio connection with the paramedics. Who were in the parade, so convenient :) Cole loved it! His favorite part was the marching bands. When the fire trucks passed he said, "They are coming to rescue me!" So cute and so sad.

We were practically melting by the end, constantly fanning Cole and drinking water. We went home, skipped any BBQ's but felt like we were going to try the fireworks. I knew that I was not crazy enough to take him downtown, but we had a secret tip about watching the major display across the river, away from the giant crowds, but getting the same show with less traffic. We met up with some friends and had a great time. The show was actually better than last year this way, since you were not looking straight up and did not have all of the Smithsonian's blocking the view. It was beautiful with the reflection on the water and all of the boats anchored in the Potomac to watch the show. An awesome discovery.

All in all I was so grateful for taking chances and having them work out. Especially since Cole started to change drastically, again, just a few days later. I would still have rather been with my family and with my comfortable corner of Americana, but I feel like we made the best of the situation. Independence with a twist.

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 :)