Purple Pictures

We had a lot of participation for Purple Day this year. I loved getting pictures throughout and seeing my Facebook explode with Purple Power. We're going to have to snag a family picture on Friday, before our Dravet event. Keep sending your pictures, we love them!

From working out, to working at the dentist office. From service dogs to sisters. Friends, family, at least 9 states represented. Balloons, pedicures, and one awesome pair of sparkly purple corduroys! Hopefully they all thought about epilepsy a lot. Hopefully you thought about it too. International Epilepsy Awareness Day was started by a girl that most would call "little". She has made it into a worldwide movement. Here is our little piece of that.

Some would say...Why the purple? Why the hype? This is why.

Epilepsy sucks. Talk about it. Maybe one day we can find a cure, together.

It's Here!

We are wearing purple. Are you?

An Illustrated Guide to Our Week

Warning: I can't make this stuff up. You will laugh, you may cry.

Sunday: Slugger ate one entire wall of Cole's Lightning McQueen tent. Awesome. Painted my toes purple in anticipation for International Purple Day. Cole utilized his REAL pillow pet.Monday: Cole wakes up in a great mood and proceeds to use my yellow heels as accessories. "Mom, look at my earrings!"
Cole goes to school. Nurse goes home. We go and get my kitchen knives sharpened, had to wait 2 hours when they initially said 20 minutes. Come home and have this, complete with over a minute and a half of O2 in the 40's. Goal to make tomorrow better.
Tuesday: A day for the books. Cole literally was awake maybe 2 1/2 hours all day in between seizures. Even when he was conscious, he could not stand up and I found him curled up in a ball or laying on the ground multiple times, because he did not have the strength/equilibrium. Cancelled a fun play date with friends. Had to miss therapy (and still pay for it). Our air-conditioning breaks. Have temperature sensitive child. Got to make trifle! I hear it was good.
Come back from Relief Society and get this on my screen. Computer crashes, dead as a doornail. Lose all apps, movies, photos, documents...everything.
Wednesday: My new cookbook finally arrives, after I pre-ordered it months ago with a gift card I have been saving for almost a year. Love Pioneer Woman. Have been reading her blog years and years. Takes me back to my roots and major plus, it is really funny. No nurse.
Our landlord is not known for spending money (read: major tightwad). We have nicknamed him Master of Creative Maintenance. His favorite fix is duct tape. Alas, his solution to our rotting floor? Slap parkay patterned duct tape (aka vinyl tiles) over the top of the existing floor. Oh, and they are a lovely shade of orange. You would not believe his first option. I just look at what Cole has dubbed "The Squares" and laugh. We could seriously base a sitcom around his fixes.Thursday: No nurse, again. This is a Weeping Cherry Tree in my backyard. I gave my bestie a matching one for her 30th birthday last year. I told her that it signified my new home, since Cherry blossoms are a big deal around here, and that I was sad we do not live close to each other any more. She loves to garden, so it was a hit. However, I looked at this tree on Thursday and burst into tears. There are beautiful blossoms right now, but the imagery was fresh. There was lots of weeping on Thursday. Another Dravet child has been taken home. This time, a child of someone I knew. Someone who doesn't live very far from me, and this child was just a little younger than my own son. It hit way too close to home. Week is weighing on me. Make new goal for a better tomorrow. Hug my baby.Friday: Decide that Cole is doing good today, so stop by the farm to make up for missing it on Tuesday. Here is Cole with some new piglets. Slugger alerts like crazy and Cole gets so overstimulated he doesn't want to stay long. Sure thing, we need to go to therapy anyway to make up for missing Tuesday.
Get to therapy, Cole has a long, weird seizure where he chokes me in the process, poolside-right before the session starts. Doesn't even get to dip his toes in. Still have to pay :) Air conditioning breaks, again. Take Cole to the park, and then we all eat dinner (at a restaurant) with friends. Seriously people, we could not figure out if that has ever happened before. We may have acted really weird/excited about it.Saturday: Rain gives us some relief from the heat. Convince landlord to break down and buy a new air conditioner. Cole has a great day. Try to purchase the right belt for a dress. Now have to go through the process of elimination to decide which is the one. Feed the missionaries. Go to Hunger Games with a couple of friends while Cole and Daddy chill at home.We start all over tomorrow. Except that we have a lot of epilepsy awareness on the horizon! Remember to wear purple on Monday. The National Walk for Epilepsy is Saturday and we get to see some of our Dravet friends on Friday night! New/old goal-embrace today while hoping for a better tomorrow.

Time To Put On My Big Girl Panties...

I have been putting off getting a wheelchair for a long time. Cole fit in the stroller and it met my needs.

He uses a wheelchair at school when he is post-ictal. When we are using our stroller though, Mr. Long Legs has started to hang his giant limbs, inherited from his Dad, over the foot well. Remember-I am what they call short. We have a special needs umbrella stroller that was donated to us. It is huge, has no storage for the oxygen and you need both hands to push it. I took it out once and I couldn't shoulder the bag, the oxygen, push with both hands and handle Slugger at the same time. Plus, it does not have a sun shade. So, it looks like I am going to have to crack down and go the other route.

It wasn't so much that I would have a child who needed a wheelchair, I think that I came to terms with that a while ago. Although it doesn't mean it was easy to accept. It is the paperwork.

Oh, the special needs mom and paperwork! It. Never. Ends.

Along with the mountain of paperwork and the evals that will have to be done before we can attain an "official" chair, there is the matter of how heavy they are. Along with being vertically challenged, I don't have a lot of cartilage in my rotator cuffs, especially my right (dominant) arm. It makes lifting a challenge. Some of the "lightweight" chairs out there are 80 pounds! I also can't get a new car, lift, etc. for something that we are not going to use on a daily basis.

Every model I have been looking at over the last year have had something missing. Therefore, it just helped my procrastination.

Enter BFF. She went to the Abilities Expo in Atlanta this year and took quite a few different products for a spin. Among other things I love about her, I trust her judgment explicitly. Low and behold, she found a chair that fits all of our needs!

*Needs to be able to recline-Cole can not hold his head up post-ictal.
*Needs a sun shade for our photosensitive boy
*Needs under mount storage for the oxygen tank
*Needs handle push bar so I can use one hand if necessary
*Needs small turning radius, maneuverability and can go on dirt paths -remember our trips to Mt Vernon? Oh, and that Golden Retriever!
*Needs 5 point harness to discourage escapes
*Needs to fit into our current vehicle
*Needs to be lightweight

I think we found a winner! Be on the lookout for Cole's new ride. That is, after I can finally finish all of the paperwork and order it :)

Professional vs Personal

Here is another article that I wrote for specialneeds.com
______________________________________________________________

In my previous life (before I was a special needs mom), I was a social worker. My resume is almost as eclectic as I am and I worked with a large variety of people. Foster care, adoption, child protective services, group homes, palliative, Native Americans, teenage sex offenders, elderly, abused, medically fragile, addicted, you name it...I probably ran into them.

During this foray into my personal version of saving the world, I came across many, many people with special needs. My vocabulary included things like Individualized Education Plan, hippotherapy, Autism Spectrum Disorder, Durable Medical Equipment, tidal volume, Advanced Directives and a whole host of other words and phrases that we, as special needs parents, are all familiar with. I had no idea that I would be using these words in my day to day life, when I was not working.

As a director for several companies, I was able to meet and hopefully help parents, siblings and children navigate "The System". I also became fluent in speaking Insurance and Doctor. I seriously believe that those languages should be taught in college. It will get the average person a lot farther than a semester of German! Familiarize yourself with the right terms to keep up with the new foreign languages that will pop up in your journey.

I also learned that YOU are your child's best advocate. You know them the best and you want whatever is going to improve their quality of life. There are a lot of people out there to help you through this, but they will never know your child like you do. Anyone who is disabled in any way needs someone to advocate for them. As a parent, it is your job to second guess. Ask the hard questions and fight for what you believe needs to happen with your child.

Sometimes it can get so overwhelming that you just sit back and nod your head, letting the professionals tell you what to do-because they are professionals! I am not bashing the medical professionals out there. Hey, I used to be one of them! They went through a whole lot of school, tests and other stuff to get them where they are today. Without these professionals, the majority of us would not have a diagnosis to explain what is happening with our child. I used to have to tell my patients all of the time that they practice medicine. Trust them, but be smart enough to do your homework. I also learned that Google does not have all of the answers. Surround yourself with the right people. You have the right to get a second opinion if you want! I think that some of us forget that. Still, go with your gut and follow that "Mommy Instinct" if it tells you that something isn't quite right. If you do not get the answer that you want, ask someone else. "Who is your boss's boss?", is a great question when you hit a roadblock. Come prepared to meetings and research new ideas to present to your team, whether it is at school or a doctor's office.

Right along with being someone who gets answers, you are the best person to show your child love and affection. Sometimes we distance ourselves from things that are hard and make us sad. After being a social worker for years, I have realized that not all mothers love their children. If you are reading this, you are probably not a part of that group. No one can love quite like a parent. Be willing to give professionals all of the information that they need to get to know your child. Talk to other parents who have children with similar capabilities. Above all, don't be afraid to ask for help. You might be surprised who ends up being your personal champion.

I personally wanted to be a social worker because I could help people. It was not because I wanted to be rich or famous. It was hard, mostly thankless work. It really prepared me to be a mother. The people who are helping you today are probably there for the same reasons, they just probably get paid a lot more than I did! In the end, no amount of education can provide the same insight that a parent can.

Overwhelm or Overcome?

So the other day I was driving along enjoying the gorgeous weather and blooming trees.

I had just finished grocery shopping and was reminiscing that it had been exactly 3 years since my heart surgery. I was thinking about how I have only had 2 seizures in that time. How wonderful is that?!

So, I am just cruising down the street, singing with Adele, thinking good thoughts. On the sidewalk, I see a father pushing a baby in a stroller, obviously enjoying his day too.

and then I had to pull over because I had the wind knocked out of me and felt like I was going to sob

Man, I hope this gets easier.

7 Things You Don't Know About A Special Needs Parent

I really liked this article.

Just Keep Swimming, Just Keep Swimming...

We watch a lot of Finding Nemo around here. Dory's mantra gets stuck in your head, but it is also a really good life lesson. When life gets you down, "What do you do? You SWIM!"

After an interesting week seizure-wise, these pictures make me smile. For anyone wondering what goes into an aqua therapy session with a 4 year old, here is a glimpse.

Swimming with a Wonder Board. Going to the wall to retrieve it.Cole's therapist brought her waterproof camera and shared these pics with me.
Crawling up and down an incline. Sometimes with weights, sometimes without.
Cole just being Cole and sticking his head under.
He throws these blocks, then has to swim or walk through the water to get them. Then it starts all over. Like an intense game of fetch.

Just a little piece of a 45 minute session. Thank you Lead Changes Therapy!

Purple Day 2012

We have been celebrating Purple Day for a while around here and I have mentioned it on the blog a time or two before.

This year, we are actually going to attempt to go to The National Walk For Epilepsy. Cole has been doing much better at handling the overstimulation of being outside and if the weather cooperates-we will be there! We are so excited to have many family members who will be joining us for this event.

One of our great friends, from Haley is My Hero, has made a video this year for Purple Day that includes a lot of our Dravet buddies. See if you can spot Cole and Slugger!



Wear purple on March 26th and support people with epilepsy just like Cole, Haley and me!

Unpredictable

We all know by now that Dravet is unpredictable and always changing. Especially while kids are young. Take this week for example. Cole has been doing really well, only needing a small dose rescue meds a couple of times a week for the last couple of weeks. Wednesday he had a lot of small seizures and struggled near the end of school and into the evening. Schools have been closing for Norovirus out here and I decided to keep him home on Thursday just in case he was getting sick. Thursday rolls around and we are supposed to have beautiful weather. 70 degrees! I couldn't just stay in the house, and Cole was doing really well, so I pulled a spontaneous trip to the zoo for a couple of hours out of no where. I was supposed to be going over to a friends house for something, but we ended up convincing them to come with us! Who wouldn't like to skip school to go to the zoo? (Mind you, their mom is responsible and we waited until they finished school to go).We were only there for an hour, which some people would say is not worth it, but we had a good time. Cole did great and Slugger was as much of an attraction as the animals on display. Everywhere we went, we heard kids say, "Look! It's a dog!" Who cares if there are lions and tigers? There's a dog here! :)

The animals seemed to get a kick out of Slugger too. Especially these donkeys at the children's farm. They were not paying any attention to the masses of pre-school kids on field trips, but when we walked up all 4 of them ran up to the fence and were totally interested in Slugger!Can't you just hear them say, "Hey, man! How did you get on the other side?"We came home and Cole ended up having a really weird seizure where he curled up in a ball and was extremely sensitive to touch. Never seen that kind before. Regardless, I sent him to school on Friday since it was one of his friend's birthday and he had been doing fine all morning. I was in the bath when I saw the nurses name pop up on my phone (yes, people..I bathe with my phone. I need to hear it if Cole is having a problem in school). I knew it must be a seizure, so I jumped out, dripping hair and all and ran around getting dressed while she explained what was going on. It took me 6 minutes, a little longer than usual *wink* , from the time she called me to the time I got there. Yeah, I am sure that I was quite a sight! Mascara circles under my eyes, looking like a drowned rat. I never could pull off the wet look :) So thanks Dravet, for reminding me that I do not have the right to shower-even if I am alone in the house.

This particular seizure was, once again, different than what we have been seeing lately. He bit his tongue, which he has only done once before, so he was bleeding (me-I am not so lucky). He also just passed out and went into a full tonic-clonic, no small leader seizures. He used to do this all of the time, but it has been a while since he has just fallen on his head. He has a nice bump to match the permanent one on the other side. A constant reminder of the days when he used to have atonic drop seizures and would hit the same place over and over as he fell. Lots and lots of drool and for a while I thought I was going to have to take him to the ER for suctioning. Even after the seizure stopped, he was really junky and I could hear rattling in his lungs. I was pounding on his back and encouraging him to swallow, but he was unconscious. I was certain he was going to aspirate. Every time without fail, when we go to the hospital (no matter how long we are there) Cole picks up whatever is floating in the air. So you can understand why I was hesitant to pack up and possibly make things worse. After a 3 1/2 hour post ictal phase, he woke up and was able to clear the phlegm. Thank goodness!

So, same jacket, different day. Same little boy, different conditions. Through all of this though, Slugger remained a constant. He alerted 45 minutes before the seizure and then again 10 minutes before. The nurse didn't recognize the first alert, so I guess he really wanted her to get the message. We are so grateful for him. Thank you again to anyone that helped to make Slugger a reality. He has made things that are so out of control and unpredictable, a little easier.

Todd's Paralysis

Cole has had so many "rare" things happen to him in his journey. I wanted to spotlight a couple of them in case there is another mom out there wondering if what is happening to her child has happened to someone else. One of these rare phenomena is Todd's Paralysis.

It will affect mainly one side of his body. It has also switched sides. Most of the time, he can not use one of his arms for a couple of hours after a seizure. Sometimes, it will affect his legs and he will want to walk, but cannot. Occasionally, it will happen with the muscles in his face. One side will droop and he will not be able to talk or smile for a while.

We are lucky that he has not had any permanent paralysis, which can be possible after a seizure or stroke. I just wish that I would have known about Todd's Paralysis before it started happening, time and time again. We had to go through the whole, "Why is his arm not working?!" debacle many times before we recognized that he would eventually regain function. The paralysis would keep switching sides and body parts and lasting for different periods of time. It was so confusing since he was fully coherent and out of his normal post-ictal phase. That was a scary thing to add to the complications of a seizure.

So, if you have a child who has epilepsy and for some reason, even after they are out of their post-ictal state, they can not move one side of their body-it is probably Todd's Paralysis. They will regain the function, you just need to make sure that they rest. Easier said than done, especially with an active toddler who has a stubborn streak like his mama.

Just another quirk to add to our ever expanding medical dictionary.

Expectations

When I think of the last 18 months or so, I sometimes surprise myself with how far we have come.

I think about the holidays in 2009-2010 and that huge leap of faith we took when we had Cole meet Santa for the first time and how nervous we were about it...and I giggle. I admit it, time and time again I think "I can't do this!" and I prove myself wrong. We have overcome so many hurdles in the last little while, with a long obstacle course still set up on the horizon, but we can do it together.

Sometimes it really helps me to go back and check my archives and remember just how hard (or easy) some things were. At this time last year, we were unpacking. *Happy Anniversary to us! One whole year being DC'ers* We were preparing to change our lives. We had moved clear across the country and had nothing that was familiar. I was so nervous about the flight. It was not easy, but it could have been worse. Cole has since flown 4 other times, to Florida for treatment and home for Christmas.

Cole cried and said that he wanted to "Go home to my house!" for about 3 months, every day. It was heart-breaking every time. Now, he knows our street and can name which house belongs to which neighbor. He loves being home "with my toys" and shows anyone and everyone his kingdom (the basement).

I was really worried about all of the stairs in our home. For a good reason, since Cole has fallen on them and broken his foot. However, going up and down those stairs every day has been awesome physical therapy. When we first moved, Cole could not navigate stairs. He still slid down on his belly at 3 years old and could only get up them with a very laborious one foot, then the next to join it...one foot, then the next kind of process. Now he cruises up and down them like it is second nature. He still can not take a stair without bringing both feet on to it, but hey...progress is progress!

School has totally changed Cole socially. He will now interact with other children. This, is huge. School, is the best thing that has happened to Cole in all of this.

We tried new med combinations, which did not work. Had new presentations of seizures. We had 3 hospitalizations, 5 (I think) visits from the paramedics, 6 ER visits (some without paramedics), 10+ nurses, three casts (on the same leg), one amazing dog and a lot of fun.

I find that our expectations have changed so much in this period. We became brave and started going out in public. We started to stay out, even after seizures. We traveled by car and plane. We stayed home. Holy cow-we actually left him in the care of another person for more than 24 hours! We made friends slowly but surely. I am finding out more and more about myself and the expectations that I had for my life that I did not even fully realize. All in all, I am proud. I am proud of my little man for teaching me so much about achieving and also about accepting whatever comes.

The Fish

I have been trying to get Cole into aqua therapy for over 8 months now. Turns out, it is hard to find a therapist in our area. Add that to finding someone who has an opening when Cole is not in school or not on Sunday and it makes it even more difficult. I can't even start on the Reader's Digest version of what it took to get into finding someone who takes our insurance and the process it was to actually try and get an "alternative therapy" approved!

SO, like other things that we have tried including homeopathy, neurofeedback, SPIO and other stuff that has been considered "alternative", aqua therapy is not seen from an insurance point of view as something that is useful (aka-should be covered). However, we took the plunge hehe. I think I might get it 60% covered...maybe. We'll wait and see.

Cole has not had formal therapy for a year now. In a Dravet kid's world, that is just crazy talk. WHAT?!! Just plain crazy. The majority of children Cole's age who have a Dravet diagnosis have global therapies (mainly physical, occupational and speech). He needs it, but with the move and starting school, Slugger and everything else that went on last year, adding dragging him around to various clinics to get maybe 30 minutes a week of therapy just didn't happen. So, I put the pedal to the metal at home and we did a lot of stuff that would qualify as therapy. Everything from fine motor to gross motor to speech, feeding, occupational, social...you name it. His left side is weaker than his right. He still runs sideways and leads with his head. He still toe-walks occasionally. Still needs deep pressure therapy. Still working on jumping, but man we have come a long way for just the two of us (and Slugger)! Still, Cole can only benefit from me so much. He has Occupational and Physical Therapy built into his IEP at school but let's be honest, it is not a real session. Remember when I went to school every day for 4 months? I saw the therapists and the time that they spent with my son. It was not really their fault, since they have to see an entire classroom of kids once a week for 30 minutes, but nothing they did with Cole could lead to progress.

That said, I have started dragging the boy an hour each way for 45 minutes of physical therapy, in the water. He loves it! Just like I knew he would. His seizure activity has dropped during the sessions now that he is used to his environment and his therapist. He really pushes himself because he is having so much fun. The car ride is hard on him. Add to that half a day of pre-school and he is one tired boy by the end of Tuesday.Aquatic Therapy is a good fit for Cole since it strengthens his core, hopefully slowing ataxia and the crouched gait that a lot of Dravet kids get. His limbs are also supported by the water, so he can work twice as hard, using the resistance and support of the water to exercise his muscles instead of just using weights-which he hates. It's also fun for him, so it keeps his attention a lot longer than traditional therapy.Things like having him crawl with weights in his hands would take a lot of cajoling from a therapist in a regular PT session.Slugger gets a lot of attention while we are there. You really don't expect to see a dog at an indoor pool! It is really hitting us hard in the financial department-over $100 a week out of pocket; but I know that it is really helping! I can already see him using his left side better. Plus, it is one of those things that gives me a "pinch-me" moment. Last year at this time, we could not even take him near chlorine. Let alone to an indoor pool that has other people in it! Talk about overstimulation :) temperature, new environment, light, noise, the works. We could not have spent two hours in the car, eaten a meal on the road (geez keto, I am glad you are gone!), or have therapy and school in the same day. We certainly did not have a nurse to help me drag everything around and keep an eye on Cole while we are in the car, and we did not have a hairy, lovable pooch to cart around. So yes, it is hard work. It costs a lot of money. But man is it worth it! Look at that smile :)I think he may even be ready for hippotherapy...and when that happens, I am going to break out bawling; I just know it.

On Being Rare

We just celebrated Rare Disease Day on February 29th, which in itself is rare!

Having a child with a rare diagnosis is a hard, wonderful, terrifying, liberating, exhausting thing. There are 6,000-8,000 rare diseases that have been identified. Then there are cases like our friends Bertrand, Charlotte and Lily, Davy and others who do not have an official diagnosis.

It is difficult when you have to explain to doctors, therapists and others that you are not really sure what is going on with your child, because they have no idea what should or should not be happening either! In the last year and a half, since we have had our official diagnosis, when I have said that Cole has Dravet Syndrome; I can not count how many people have gotten a perplexed look on their face and said, "I've never heard of that one".

Being rare means that you have a more difficult time finding professionals who can help you. It almost becomes your family's identity, since your world pretty much revolves around the person with special needs. It makes for a more difficult time getting insurance to cover expensive tests, procedures and medications. It is rare to have conversations that don't include the words therapy, treatment, genetics or development and it puts you in a category that is far beyond "normal"...whatever that is.

Now the majority of parents won't leave their child with just anyone, but I can't even leave my child with a trained medical professional. I personally have to give at least 20 hours of supervised instruction to even RN's before I will leave them alone with my son. His case is not textbook, so they never really learned about him in school-no matter how much time they spent in the classroom. Add to that medical knowledge, personality and physical capability and it sure makes it hard to find a baby-sitter!

For us, it has been a great blessing to have a label, definition, diagnosis, whatever you want to call it, to define what is happening to our son. There is something wrong with his DNA and that creates a domino effect on every other aspect of his life. Mine too. We find great strength in the few other parents we know who have a child with Dravet Syndrome or another rare disorder. Because, come to find out, being rare isn't so rare. There are so many others out there, official diagnosis or not, who just want the best for their child. There is strength in numbers. Even if we feel so isolated and alone, because only a handful of people in the world have a child similar to ours, it is great to know that there are a couple of people that we can reach out to and have the "I've been there" talk with. Anguish, pride (the good kind), heartache, joy, excitement over seemingly simple things, confusion, exhaustion, defeat, frustration, victory, pain...these things are not so rare.

A Major Case Of The Sickies

Now that February is over, I can genuinely say that at least one of us were sick...the entire month.

Cole missed over two weeks of school due to illness. Fevers, coughing, the works. I am so glad that we did not end up hospitalized.

Daddy actually had to take a sick day for himself-that never happens.

He also had to take a sick day for Mommy. That, is not as rare.

I am done with the vomit, stomach issues, migraines and body aches. Oh, and seizures.

My brain has been so fuzzy that I have not been able to focus on anything. I have three articles that I should be working on, but I can't gather enough brain power to write. I literally spent four straight days in bed and did nothing. It was too much to even watch tv. I did, however, play on Pintrest a lot :) Doesn't take a lot of mind power to look at cute stuff sporadically. Pintrest is evil and wonderful all at the same time.

Here is to hoping March is much healthier!