Our Florida Adventures

We had our 6 month visit with Dr Miller scheduled for November.  We decided to move it from the regular clinic day and combine it with our Thanksgiving break.  Two birds with one stone! 

Before we even got to the hospital, we had all sorts of drama.  Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying.  Somehow taking care of a seizure at 30,000 feet isn't so easy.  Landing the plane, also not so easy.  We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight.  God has a sense of humor!  Cole made the flight, but had a severe seizure at baggage claim.  We were quite the sight.  Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on.  Hey-he didn't have one ON the plane!  The next day he was so bad that we considered calling 911 and going to the local hospital.  However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day.  We didn't call, Cole made it through the night.  We got up the next day and headed 3 hours south to Miami Childrens Hospital.

While we were there, Cole had his first sleep study.  Results show there is no major change.  He is still seizing throughout the night.  No sleep apnea though, hooray!  We discussed with Dr Miller the increased frequency in tonic clonics and myoclonics.  Cole had not been sick lately and we felt like we had a baseline established, as fluid as it was.  Bottom line was, we knew that the Onfi wasn’t working. 

Dr Miller, as great as he is, basically tells us during our appointment that we are running out of options.  Which we kind of already knew, but it is hard when one of the best doctors in the country for what your child has, tells you that he can’t help you.  Cole has tried 7 or 8 meds at this point and has failed them all except Keppra-which we really don’t think is working very well anyway.  So we decide to get off of Onfi.  Next stop, Verapamil (a blood pressure med of all things).  You know we are all about Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old meds.  We discuss alternatives such as VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as ACTH or prednisone.  He wants to see us in 3 months.  Okay, now things are really getting real.  On the day we visit Dr Miller, Cole has three tonic clonics.  He also seems really sensitive to light.  Much more than usual and is hiding his head under a blanket.  I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.

The next day all hell breaks loose.  Cole has 4 tonic clonics and was basically in NCSE (non convulsive status epilepticus) the entire day…we just didn’t know it.  He is inconsolable and we can tell that he is in terrible pain.  He is actually complaining of eye pain.  For a kid who has run around on a broken foot, twice, this is huge.  The light sensitivity is very intense and he wants his special glasses on even indoors.  We try a double dose of Keppra, Motrin, Tylenol…nothing is working.  We contact Dr Miller and tell him we suspect a migraine.  He tells us to give a combo of Benadryl and Aleeve.  By tonic clonic #3 we are getting anxious.  We give Versed, it doesn’t help.  Cole can’t hold up his head, is drooling profusely and can barely speak.  Yet, he doesn’t want to be left out.  The boy is adamant that he is a part of the holiday party and refuses to sit out in the car with me.  So I take him inside and he sits on our laps, wrapped in a blanket as we eat and looks the definition of disabled, which is rare for him.  But he is there and he breaks out a crooked smile; such the definition of resilience.  At TC #4, it is evening and we call the on-call neuro, who told us she was extremely nervous and wanted us to come in.  It is never reassuring when a neurologist admits to you that they are nervous!  We explained that we were 3 hours away and would have to be Life Flighted, which could take over 5 hours from start to finish since we had to go through the local ambulance, hospital, etc.  She agreed that it could take too long.  Getting through to a new hospital that doesn’t know us and doesn’t know Dravet takes forever.  By the time they believed us enough to call Miami and get the go-ahead, it could be hours.  Remember he isn’t actively seizing at this point so to a regular doc, he would look fine.  She suggested that we actually get in the car and drive down.  At the end of the conversation she gives us instructions to give him Diastat and a double dose of Keppra.  If he has another, we are to call AirMed and get down to Miami.  No matter how inconvenient it is.  The Diastat in combo with the other meds settles Cole’s brain to the point he can sleep, just through the night.  It also tips us (and Dr Miller) off to that his supposed “migraine” was actually bizarre seizure activity.  Since pain relievers did nothing for it and a benzo did, it was probably seizures.  Weirder things have happened with Cole.  Add it to the list of "rare".  Most regular people would sleep for a day or two with all of those medications in their system, not our Mini Hulk!  He only got a 7 hour nap.  We truly experienced a miracle though and made it through the night.  I really didn’t want our first helicopter ride to be in a different state and take a couple of hours.  Thanks divine intervention! J

Those meds carried over and he did not have a major seizure the next day.  However, we got a new surprise at night.  Cole started having major nocturnal seizures.  Tonic clonics that last from 30 seconds to a minute.  He will sit up in the middle of the night, grab his face with his shaking arms and have full body convulsions.  We can only hold him and tell him that we will be there for him.  They are too short to drop his oxygen and don’t need meds.  However, it gets my brain kicked in to overdrive and I just lie there awake, waiting for the next one.  One night he had 9.

The next day, I had my mommy instinct telling me he might have an ear infection.  Mind you, there was no complaints of pain, no major fever, no pulling of the ears, no lethargy, just a hunch.  We took him in and BAM, both ears were infected; they started him on  Amoxicillin.  The rest of our Thanksgiving break was full of nocturnal seizures, but he had a break with daytime ones. 

I was so ready to go home.  I wanted our routine back.  There were rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money.  The hurricane, him being gone, Miami, the holiday and all of these seizures were getting to me.  So, we were grateful for the break from daytime chaos.  Well, at least where seizures were concerned!  We had a great time with our cousins and other family members that we don’t get to see very often.  Plus, it was 80 degrees the day we left!  Is 32 too young to become a snowbird? J

Evacuate

Hey there.... *awkward silence*
It's been a while.  How are you?

We. are. alive.

If you live in the United States, you probably heard of Frakenstorm otherwise known as Hurricane Sandy.  At one point it was headed straight for us.  So, we readied our house.  Our emergency preparedness skills kicked in, full force.  We took everything out of the basement.  Moved all of our pictures and precious possessions to the top floor.  Pulled all of our furniture away from the walls.  Put towels in all of the windows.  Got gas for the generator, bought water and food.  Stocked up on medication.  In the end, even though we were super prepared with heaters, batteries galore, flashlights, blankets and enough food to feed a large family for weeks, we still ended up evacuating.  It was the best thing for us as a family, especially for Cole.

Our house was fine and we ended up spending the time in warmer weather.  Some would say, "Why?".  Others knew exactly what we were thinking when we packed up and left in a matter of hours.  Barometric pressure, possibilities of no power, no access to the hospital, etc.  Even if there was something as simple as a tree blocking our road, it meant that the ambulance couldn't get to our house if we needed it.  We didn't know what would happen, but the majority of our life is hanging in the balance of the "cone of uncertainty" to use a phrase from the weather man.  We didn't need any more uncertainty.  Our life is an emergency and we did not need to add to it.  So, we left for a little while.

I feel like I have kind of evacuated the blog.  Even social media.  No more Instagram, very limited looking at Facebook.  It was the best thing to do in the moment.

I really want to catch you all up on what has been going on around here.  Honestly, it is overwhelming.  Failing multiple medications, stress with work, new therapies, school stuff, nursing stuff, family stuff, and more just stuff.   Cole is having more seizures than ever...and I mean, ever.  I kind of evacuated my life too.  This little semi-reseblance to a normal existence that I have been carving out for the last year has kind of been put in the closet.  Since our nursing is extremely limited I have gone back to full time caregiver 24/7.  The boy is with me everywhere.  He has also been missing lots of school.

Hurricane Sandy also took our daddy's attention for a month.  For a week he was constantly on his phone and computer and then he was in NYC for two solid weeks.  Cole was really struggling during all of this and it could have been a really dark time.  In the end, it showed me that I am stronger than I thought.  I always knew I was good under pressure, but I really reached my breaking point.  That is when people stepped in, who owed me nothing by the way, and took a little piece of the burden.  We are not out of the woods yet.  We almost had to Life Flight Cole and my little calendar book is full of days upon days of multiple major seizures per day.  We went to Miami and hopefully have a new plan (or two), but we are kind of running out of options.

Stuff like the blog, e-mail, Facebook and Instagram have been so far in the back of my mind that it seems like another life completely.  I still miss you and want to catch up on our high highs and our low lows, if only for record keeping purposes.  In between all of the trips to the hospital and the days of not showering because you can't leave Cole for a second, we have had some funny, good times.

Stuff like Cole going to the beach.  Playing with cousins we have not seen in a long time.  Cole being obsessed with excavators and wanting to call Santa on the phone.  We have always known that the only thing we can control is our attitude.  So-we had an adjustment and are going to make this holiday season the best that it can be.  Yep, our life is still an emergency; but we will show up at the ER with antlers and tacky Christmas sweaters!

Happy Holidays,
NIK

P.S. We got nominated for an award.  Kind of fun :)

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 Best Mothers Day Present

I have been trying for years and years to get Cole to say the alphabet.  I sing the song to him every day.  We watch videos on YouTube.  He has apps on the iPad.  It is not a forced, "must do this" kind of thing anymore, but routine.  I had accepted that he just may never be able to do it, but did not give up hope.  It is a developmental milestone, so we still worked on it.  

Cole gave me a wonderful Mother's Day present this year.  He sang the entire song, unprompted.  Without stuttering.  I was so shocked, that I asked him to do it again and pulled out the phone to video it.  It gave me chills.  I have no idea if this has anything to do with the new dose of Keppra he is on, or if it just finally clicked, like it did with potty training.  He has not even made it past the letter D before.  Regardless, I was thrilled.  It made my eyes water and my heart sing.  For my first Mother's Day, he rolled over for the first time.  That was a few months before his first seizure.  

So, I present to you-my Mother's Day present.  My baby, at four and a half, singing the ABC's for the first time!  Only missing one letter and replacing P for V.  

Eggscellent!

We had a lovely Easter. Braving the open road, we were in the car for over 7 hours. Remember this? Just six months ago, being in the car for an hour was too much. Thank you Slugger (Poor dog. He probably had no idea that wearing bunny ears was part of his job description)! I really believe that he has opened up a new world to us.
Cole did awesome and we had a great time with some of our Dravet friends. I hope that we can have another low-key adventure soon!

Don't worry-Dravet has reminded us that it is not going away. Still, we have to enjoy the fun whenever we can!

Done?

Blogging has been hit and miss for the last few months. Due that my readership is largely made of special needs moms and the random relative, I am sure that YOU understand...I am just not sure that I do!

I have been in a random state of flux for the last few weeks. For example, incredible joy at the good run we had with beating the tonic-clonic monster into submission and then flowing towards the depression of the harsh realization/reminder that Dravet is never going away. You really would think I would be used to this by now.

Even my attempt at humor with the OCD organization of my purse fell flat. I just can't seem to be witty lately.

The funk can't really be pinned onto a single event. It is just there. Bleh.

My drifting has led to sudden spurts of creativity, but nothing seems finished. I have a few posts in my blog attic (drafts) that are no where near publishing and that birthday present I was going to make for my sister just didn't even have the legs to get off of the ground.

However, it has also led to random bouts of cleaning out closets and cupboards, which is awesome, but at the most inopportune times. Like deciding to organize the pantry and my spice cupboard right before a birthday party. Who does that? No one is going to look inside and see if my jar of oregano is expired! I have thrown away bags and bags of broken toys, expired canned food and stained clothing. I can't really say that I am nesting, or spring cleaning. It just happens. My sanity is clearly questionable. Good thing I hang around a dog and a toddler :)

Speaking of birthday parties...Someday, maybe I will be cool enough to try and keep up with my friend, E. Right now, it is futile. Check out her daughter's mermaid party! I used to be the queen of theme parties, hosting and inviting over different friends and having a blast doing it. I admit, I am jealous of her creativity. That spark of mine is gone in this haze of cotton-filled numbness. Replaced with survival tactics.

Even the thought of undertaking a party is exhausting right now, especially when Cole could care less about them. SO-the party to celebrate Cole's four years on earth was extremely simple. The weekend before, we invited two families in the area who were in our class at 4 Paws For Ability and have siblings of Slugger's. We had a great time, even if it was nothing to photograph or blog/brag about. I will say this though, three golden retrievers in my living room, in a wrestling match, is quite a sight. We should have charged admission!

Any event has changed with our new perspective. Holidays are celebrated in minimal ways and there is way less pomp and circumstance than I am used to. On Cole's birthday I took the popcorn machine to his class and was the "cool mom" for five minutes while a group of eager pre-schoolers watched the miracle that is popping corn. That's it. Brian was out of town. Cole can't have cake. He did not even get the concept that the day was (supposed to be) about him. It can sometimes be depressing to the woman who thought she was going to have the coolest birthday parties ever for her kids. That Pintrest file, just sits there full of ideas that I am never really going to put to use in the near future.

However, someday I am going to have the fun parties again. Someday I will have the creative spark to write things that move other parents and make them smile. Someday I am going to deep clean my house on a schedule and not just when I feel like it is getting to the point of contamination possibilities. I still do the necessary stuff every Saturday, but things like washing walls-let's be honest, it just doesn't happen around here. Someday we will have friends. Maybe someday we can go on dinner dates and will read books that have nothing to do with genetics. We just keep telling ourselves that it won't be like this forever.

The other day, I had a "DONE DAY". You know, the one's where you are just done. Done with dealing with the nursing issues, done with insurance, done with trying to make ends meet and coming up far short even after trying to tighten every realm, and on and on. I was done with trying to figure out our next move with medication. Done with trying to be a detective and figure out if Cole was sick or just reaching his seizure threshold. I was done with money-we went without presents for Christmas, birthdays and our anniversary to help pay for Slugger. I was done with fighting for therapies. I have kept being turned down time and time again for Aquatic Physical Therapy, and when I finally got him a spot recently-I realized that I don't have the money to pay for it, even after all of the trying to make things minimal. I think that every mom has days where she is just "done". Whether they have a special needs child or not. Anyone can be "over" something or "done" with it.

I am done with a lot of stuff, but I am not done being a mom. I am not done fighting, I just want to take a hiatus. I'll snap back, just like I always do. I really don't have much choice there :) Am I the only one that has ever wished to vacate their life for just a few days? Probably not. A big portion is my attitude. Nothing is going to be simple, ever. I can not change that. I can change the way I think about it though and have some great examples to look to. I am not done being the primary caregiver for my child. I am lucky that I get to keep him at home. Some people do not have that option. I am not done with a lot of things. I can look at Cole and find strength when I did not think I had any left. He had an hour non-convulsive status seizure on Friday and stayed post-ictal for over 3 hours, continuing to have myoclonics and dropping O2 sats. Really, I had planned on taking an easy day since Brian had been out of town all week and I had been up all night for multiple nights, listening for any signs of seizure. Cole had to do his thing and make it interesting, thus ruining my plans for a relaxed couple of hours while he was at school. He is worth it though. I made it, and he made it too. Apparently, he is not done letting me know that he is the one who rules my life...and that is okay, because I am certain that I will never be "done" with him.

Our Christmas Miracle

Has it really been that long since I posted something decent?

It's just a testament to how darn crazy things have been around here.

Bringing Slugger home truly was like bringing another baby into our family. A very long-haired baby. He still does some puppy things, like eating cheeseburgers if they are left unattended and chewing every toy in sight. Just yesterday I wrestled a small plastic dog, two marbles and a little red ball from his jaws. The dog and ball are no more...thank goodness he didn't shred the marbles. Yes, he has appropriate chew toys, he just wants to share the love I guess. It's more like having a brand-new toddler than an infant. I still have to feed him, clean up after him, bathe him, brush him, etc. However, he is mobile, so we have to "baby proof" the entire house. He has tried to get away with things, like any good self-respecting toddler, and needs reminding of the rules. It has been a major headache trying to weed through the nurses and figure out who will make a good handler for Slugger. Looks like I am going to have to start from square one again with some of my shifts. Others, have handled it beautifully. Still, without Slugger we would never have had the opportunity to do the things we have done in the last month. The only thing that has changed is bringing him home...and it has changed our world.

After a year and a half of trying to potty train Cole with every method imaginable-he has finally got it. Was it his teachers, treats, peers, daddy? Nope, it was Slugger.

His language has improved and he is all around more content. He has actually slept in his own bed throughout the night without another adult next to him for the first time in over 2 years. We're still working on it happening every night, but hey-MAJOR improvement. Knowing Slugger is on his bed has helped him to go back to sleep when he inevitably wakes up in the night. We were going to start Clobazam (does this sound familiar), but something told me to wait. So glad I waited...again. Cole has been sick twice since we brought Slugger home, each time for about a week. What can I say, pre-school is a germ factory :) Adding a new med while sick doesn't give you a great idea of how it works.

This time last year, the g-tube was fresh. It has saved my butt more times than I can count. We were still on full fledged keto. So grateful that we are done with that. We didn't go ANYWHERE. Even going to our neighbors for a couple of hours was a huge undertaking. Cole hated Christmas. He ran away and couldn't handle the overstimulation that came with any celebration. We spent the majority of any get-together, no matter how big or small, in another room. This year was completely different.We embarked on a vacation bigger than anything that we have ever attempted before with Cole. It included 6+ hours on an airplane (twice), up to 7 hours at a time in a car and never being in the same place for more than 2 days. Oh, and did I forget to mention that we visited Disneyland? Yep. The nightmare of all overstimulation.

Cole was fine.

You heard me.

In fact, he has gone over three weeks without needing rescue meds to stop a seizure. He has not gone that long since 2009. Our previous record was 17 days.

The only thing that has changed recently is Slugger. No magic med, no intense therapy, no special adjunct anything. Just a dog. A very special, expensive, totally worth it dog. We knew that there was a possibility of a decrease in seizure activity when we first got Slugger. We didn't hang our hats on it though, all kids are different. We are religious people, we believe in angels and prayer and know that we have had help from so many people to get where we are today.We know that Cole is going to continue to have bad times. 'Tis the nature of the beast. Dravet has taught us that we can never get comfortable, because things are always changing. However, the timing of this "good spell" has been fantastic. Cole still doesn't understand the concept of Santa or Christmas. Still can't handle opening presents (it's a myolconic fest). Yet, we had as close to a normal holiday as we ever have. My grandma used to have a sign on her fridge that said, "We don't believe in miracles, we EXPECT them". We have had so many pinch-me moments this holiday. The biggest one I call a miracle, Cole just calls him Sluggie.

We WOOF You A Merry Christmas!

For those of you who did not get our card this year (don't feel bad, our families are so huge we didn't have any left) this is the photo that we used. It's kind of silly, but that's how we like things around here. Remember Last year's card?

Slugger is our present for Christmas, birthdays, anniversaries etc for the next year (or three) so we decided to wrap him up all pretty!

We WOOF you and yours a very Happy HOWLiday from the four of us and thank you for reading Epilepsy Warriors.

P.S. We got named on this list, along with some of our amazing friend's sites, as being one of the top blogs for epilepsy support.

Photography by Oscaron Photography and the actual card (it was sure cute, red houndstooth backer and all!) was by the one and only Pearenthetical Press.

Tricks With Treats-Day 6, Continued

Today we learned a little bit more about tricks that Slugger can do. My favorite is "Bang". I'll have to get a video. We all know by now that Slugger is totally motivated by food and treats. So, Halloween is an awesome holiday for him! He got lots of treats today when we were practicing all of his tricks. I am sure that he will be popular with the kids in Cole's pre-school class.

Tonight, after training, we had a Halloween party with all of the staff. Cole and Bug were quite a hit as the Pirate King and Captain Slugger. We practiced for two days with his hat, since he absolutely hates stuff on his head.Can't you just hear him think Seriously, Mom?

He kept it on really well though after all of our practice and they looked so cute! Brian of course, thinks that I am insane for making him wear it. Cole took his costume a little bit too literally and pilfered and plundered this treat bucket.Then he tried to share his treasure with Captain Slugger!Trick Or Treat!They had a small Trunk Or Treat for the kids. This was Cole's very first time ever Trick Or Treating for real. If you remember other Halloweens, it has just been too much for him. We went to two houses his first year, but he couldn't eat anything. The last two years (remember the chicken and the Scuba Diver?) were just too overstimulating. Plus, he can't have candy. Well, he shouldn't have candy. Now that he is off of the diet, this rule is not quite so strict, so Daddy gave him a little piece of the treasure.Here is what Cole thought about Halloween!
Pretty exciting.

There were awesome costumes in our class. So many, that I had to make a slideshow! I even missed a few really good ones. Like Shaggy the dog being Scooby Doo and his boy being "Shaggy". There was also a UPS man and the UPS truck. I will try and get the other kids pictures tomorrow.

Make a video - it's fun, easy and free!
www.onetruemedia.com

It has been SO much fun to be here during a holiday. It gives us an excuse to get together after class and just adds another level of excitement.Happy Howl-oween! From our Favorite Houdini Howler and the peg leg Pirate King (you think that I would have planned it, but I actually bought the costumes a couple of months ago!)

Home Of The Brave

We have now been on the new med for over a week.

What I have noticed in the days I have been able to observe:
-The myoclonics have been reduced.
-The morning is still hard. He's struggling to wake up and has a lot of myoclonic activity.
-Cole is back to sleeping more, which he always does with the intro of a new med. He's averaging 12 hours and 2 hour naps, with waking 1 or 2 times in the night. It doesn't help that he has a summer cold (official diagnosis from the doc), which is causing him to sniff all the time and be congested.

It seems that we have kept the overstimulation tolerance with the decreased Depakote. We took him on the metro for the first time to go and see fireworks on the mall. I must admit, I have high expectations when it comes to celebrating the 4th. I come from party people and a small town that goes all out. BUT, if I have to miss the celebration in my hometown, seeing Josh Groban for free in my new hometown is quite pleasant, thank you :) It took a lot of guts because we knew that there was going to be lots of people, noise, etc. We pre-loaded Cole with Valium and he did great! The way back home was more crowded than I have ever seen the metro, it reminded me of Hong Kong when everyone is going home from work. Just tuck your elbows in and hold on for dear life! Luckily, we found a little corner and Cole just acted oblivious to the chaos. Thank you, Valium!After multiple discussions, we decided to try Topamax instead of Clobazam because they have similar properties and we could get it immediately. So far, so good I guess. We are still going to start the paperwork to get Clobazam, but it is taking 10-15 days to get it into the country. SO, we'll just have it as a back up in case the Topamax doesn't work out. This being said, I think we are going to stick to this med for at least a month...he is only on a very small dose and it seems to be making a difference.Speaking of bravery, this week has had so many "firsts". Besides going on the metro and celebrating the 4th somewhere besides ID or UT, we started our nursing shifts! This has been such a great, weird, fun, stressful, tiring, wonderful, sad thing. I know...lots of emotions; but, it's the truth! Having to find someone that is qualified and then basically give them full trust in the very beginning of a relationship and counting on them to keep your child alive is strange. It takes bravery. It's also uncomfortable at times to realize that someone who is practically a stranger is sitting, awake in the next room while you sleep. Uncomfortable, yet comforting...so ironic. So we have had our first night nurse, our first day nurse and I've tried to map out a schedule. The list of things that I want to do in the next couple of weeks don't even really include fun stuff, it's totally boring things like organizing the pantry and cleaning the storage room! We'll be sure to throw in some fun stuff too :) It has been the first time that I can be in the house, but not have my eyes on Cole at all times. Weird, but a burden lifted.

Having to put the pulse oximeter on Cole every single night and sleep in a bed with me, without Cole, has also brought all of these emotions that I mentioned out in Brian. It's just another reminder that things are different. Truly though, we have entered another season in our life. We went to the grocery store together, without Cole, last night for the first time in years. It was strange, but enjoyable. We weren't racing through trying to get things done as fast as possible, it was actually kind of pleasant! :) The whole situation is just going to take some time to get used to. All in all, the bravest one out of all of us is this guy. He's a warrior.

Easter

The Easter bunny lost our new address and did not make it this year. All of the colors, candy and excitement were too much. We went through the entire weekend without eggs hunts, Easter grass, jellybeans or a single Cabbury egg.

However, Easter morning dawned and after attempting a family picture, we ventured out together to church. We had a couple of liberating experiences in the days past, why not? The tag team version of church attendance is getting old ;)The second we entered the building, the seizures started. We sat down, and made it through the opening song, but by then it had generalized. I just need to find out what it is about this building. The light? The temperature? WHAT IS IT?!!

Oh, well. We tried! I think we'll still get points ;)

Later that day, Cole tried his hand at dyeing eggs.He really just enjoyed stirring the multiple ramekins.We had dinner and enjoyed our own version of Easter festivities. The day was focused on the true meaning of the holiday. Although I miss all of the fun activities associated with Easter, and the only time of year in this country when it is acceptable to have everyone wearing hats (the British know what they are doing!), I was glad to have a little break and focus on what matters most.

Fresh Start

Let's be honest. 2010 was hard.

Not a lot will change in 2011, it could actually get worse *shudder*. The only thing that I am probably going to have control over this year is my attitude. It seems possible when I get real smiles like this one.I have noticed a change in my thinking (paradigm shift for those of us who speak therapist) in the last few months. Part of it had to do with my lovely friend, the grief cycle and that nice stage called acceptance. We have come a long way, from not even leaving the house for days to trying new, scary things like going to the mall to see Santa. I'm not ready to go wild with Cole anytime soon and try to return to a "normal" routine. I'm not even done freaking out about the impending airplane ride to Miami. This one is keeping me up at night. No hospitals at 35,000 feet. Yet, I can see how we have come leaps and bounds from where we were even this summer.

I know that each person has their own way of dealing with something major (crisis in therapist talk) happening in their lives. I am just proud of how we are coming along. I'm not perfect by any means and still have a long ways to go. I'm just glad that we are trying to give Cole the best opportunities that he can have right now. So even if that means my child ducks under the rope and tries to ride the cow in the nativity scene, at the temple, at least he can walk and is interested enough to try it ;)Yes, his dad took a picture. He is his mother's child.

"Come What May, and Love It!" is our extended family theme for 2011, from this talk. I am now a proud owner (along with all of my siblings) of a vinyl sign with this saying. A nice reminder to just react to adversity with laughter and a smile.

So here's to 2011...may our attitudes be positive and our trips to the hospital be few!

Reason For The Season

Things are starting to wind down around here. We are going back to our "nice and boring, sequestered life" as someone put it ;)

We have had a few nice surprises in the last month. The g tube is now 4 weeks old, and has been more beneficial than tedious. The childrens group from our church wrote Cole Get Well cards the week he had his surgery. It was a thoughtful gesture, as he has not been able to attend Primary for the majority of this year.One of our readers took a lot of time and care and sent Cole a package. She was introduced to our blog through a mutual friend when we were fundraising for Cole's service dog. Inside was a beautiful pieced quilt, portraying some of the things that my little man loves best. Bubbles, CARS, football, basketball, dogs (of course) and purple and orange to represent Dravet. The time that she spent thinking about this project and then actually doing it, brought tears to my eyes. Thanks Y, all the way from Texas!Cole really wasn't interested Christmas morning, like I thought he would be. He finally understands the concept of presents so I thought he would be elated to see a room full of them. Nope. Too many people; too much noise. He ran away and wanted nothing to do with the festivities. Brian had to stay with him as all of the excitement produced a small cluster and I ended up unwrapping his gifts. Once he was presented with the new toys, unwrapped...he was okay with it ;) Favorite toy=the blender.We took cues from his therapists and got things that served multiple purposes. It's quite an adventure to purchase a toy and think, "Is this going to help with fine motor skills AND critical thinking skills?" and debate within yourself if it is going to be useful. The blender was not so useful, but he is obsessed with mine. Thanks grandma!

We were so grateful that we were able to stay with our family for 5 whole days and part of another! It was a miracle in my eyes. Our car was packed to overflowing with all of the medical supplies, IV pole, scales, etc. but we did it! He only needed rescue meds twice while we were gone, which was pretty good withstanding all of the stimulation he was going through. We even went to the park and lasted for 30 minutes before he started seizing. It was great! Being together was what mattered most and it happened.

Giving is much more fun than receiving. Brian also had a birthday during all of this madness! He got a bunch of grey socks (his only request) and a couple of other things. He wanted an ice cream cake, so I was glad to give it to him ;)Wow, we're getting old.May we all remember the main reason for this time of year.

Our Christmas Wish

We were brave and took Cole to the mall to see Santa. The same mall we had this experience in. I was more than a little nervous. Living life to its fullest. ;)

This is the first time in Cole's life that he has had a picture with Santa. He'll be three in a few weeks. Something that seems such a normal part of childhood had not happened for him yet. We all have scrapbooks full of pictures of us as children either screaming our heads off or gazing with wonder at the man with the beard. I didn't get the initial running towards the jolly guy in red on video. Cole was so excited, he had a hard time waiting his turn.
We did however, capture our wish to Santa and some of moms tears. It was a big day. I like Santa's reply.

Santa, I want a cure from Niki Hyer on Vimeo.

We wish for a cure. For Cole, and for all of our friends.As we left, Cole waved and said, "Bye Santa! I love you!"

Give Thanks

We made it!

This morning we decided to be brave (stupid?) and take Cole to the family party. Word on the street was that it was going to be much more low-key than usual due to less people attending the feast.

The worst that could happen was that he would have a seizure...we do that all of the time, right? OR that he can get sick, and we have to postpone his surgery next week. Hey, surgery can be postponed; we're thankful that it isn't an emergent need right now! Besides, Cole is going to go to pre-school next week for the beginning of "the test", most likely he'll end up sick after spending time with 15 other little kids! ;)

SO-we did it. We came late, left early, but we went. We had turkey and pie and had a nap. Hit the most important highlights of a Thanksgiving day. A lot of work to make this holiday not just another day, but it was worth it.

I think that we are getting more used to our new life. There are times that it is worth the risk, like Thanksgiving. Other times, not so much, like the grocery store. Now we have to gear up for Christmas!

A Mess

This is how the house looks when Mommy is sick.
Mommy has been sick for a week and a half. Good thing we rarely have company ;)

I've been a wreck this last week. Not only have I been sick, I've just been down. I could blame the illness, but I think it's the time of year. The holidays used to be something to look forward to. Something to anticipate. I think that I have started to fear them. Halloween turned out okay, but it is the least involved of the holidays in our family. Usually, this time of year, I start to get the itch to cook and bake up a storm and test recipes for the upcoming get-togethers. Now, cooking with Cole around is a nightmare because you have to constantly be watching him to make sure he doesn't sneak food. Plus, if you are chopping, stirring and dicing, you are not watching him for seizures. He wants to be involved, since he loves to model cooking so much, and the entire kitchen gets turned upside down. At the end, no one can really share in my creation. Brian hates all holiday flavors: eggnog, pumpkin, peppermint, nutmeg etc (we call him Scrooge); we think it's stemming from a bad childhood experience because he can't explain why. Cris has become gluten, lactose and egg intolerant; for a pastry chef it is hellish. I don't have dinner parties anymore, and we don't get invited anywhere. I can't get out to give neighbors and friends treats. An entire pumpkin roll for one person? Doesn't make a lot of sense.

We are not going anywhere for Thanksgiving. My side of the family will be in Idaho and though I long to be with my grandparents and extended family, it's just not possible. There is not an adequate hospital, it would be a long drive, and there are going to be a lot of people around. Plus, Cole could not have any of the food and we would have to try and make room for his stuff amongst the holiday feast. If there is one thing my family knows how to do, it's eat. I might send Brian to his aunt's house for dinner, but after last year, we know that Cole can't go to the celebration. Too many people. His mom will be coming the week after, so we will get to spend some time with his side later.

Christmas is supposed to be at my parents. I don't even know if we can go. I am planning on it, but things always seem to have to be left to last minute decisions. How is Cole feeling? Has anyone been sick recently? Not cool, for someone who likes to plan and organize. He is at such a fun stage where he loves snow, wants to look for Santa in the sky and would totally love being around his cousins. Why can't I give this to him?! It just makes me kind of depressed. Obviously money is tight and I love to spoil my boys. I've said it before - why does Brian have all major gift giving events in a 10 day period? Birthday, Christmas and anniversary. Spread it out a little! ;) Makes it hard to be frugal. He deserves to have a huge celebration, but most likely it will be low-key...just like him.

The Continuing Resolution is wearing on both of us. We looked up the Blue Cross Blue Shield Federal plan and all of the specialists we want to take Cole to are in-network. We got so excited, and then disappointment set in. In reality, could we really lose the job after waiting this long? Seems so. Thanks politics. So, we are starting to think of plan B, C, and D. How do we get the right insurance, now, for Cole. The school evaluation did not go well, more on that later. We also made an appointment to go and get Cole a g-tube. I feel so helpless. Lots of tears, but knowing that everything will work out.

So if you talk to me and I seem a little grouchy, I'm sorry. My inside looks kind of like the outside. A little messy.

Happy Haunting

We almost boycotted Halloween. Cole can't go outside. He can't have candy. He doesn't understand the concept of Halloween yet. So we were just going to skip it.

I think we had images of Thanksgiving in our mind, from last year. Cole started seizing in the car on our way to the family party. We stopped in the driveway, Brian jumped out of the car and rushed an explanation about why we were backing out, and we headed home. Cole stopped seizing on our way back. This is when he could actually be outside and was not yet sensitive to light. Eventually, I took care of the post-ictal boy and sent Brian back to have a little quality time with his family and he brought me home some food. YEAH, we didn't want to have another holiday like that ever again. However, this is our life and the stress and excitement that comes with holidays inevitably brings on seizures. BUT - remember that goal to be more normal? We chose to make the best of things this year. We let Cole answer the door 5 times, and that probably was a little much, but he was having so much fun!

Our lucky neighbor got two pieces and an "I love you!" So sweet. After, we just put this sign on the door. The doorbell alone creates so much excitement in Cole.We took something we already had, the SPIO suit and just built on it. I ordered a snorkel mask and fins that he can eventually use in grandpa's pool and we had a bona-fide scuba diver! We asked some good friends if we could bring Cole over to their house and they could give him some small toys that I had purchased. They went above and beyond and purchased some of their own ;)Here is Cole saying, "Happy Halloween!", just like we had been practicing all day.So yes, our fall was not that fabulous. It did not include hay rides, pumpkin patches, corn mazes, costume contests, pumpkin carving, apple picking, cider drinking, cookie making, parties, or adorable pictures in the leaves. But last night, thanks to some special people, Cole experienced Halloween...in his own special way.

P.S. Sorry grandmas and grandpas that we couldn't post Cole actually saying "Trick Or Treat" when he got to the door. Mommy was trying to operate too many cameras at once and it is stuck in our video camera!