Year In Review Part 2

This is part of a series covering 2013!  See Part One here

MAY
Went on the Embassy Tours.  One of the coolest things I have ever done!

Cole is super sick.  Attended two Derby parties, hooray for hats!  End up in the PICU.

Find out that one of our Dravet friends that we know personally earned her wings.

Did a lot of Zumba with friends. Got a chunk surgically taken out of my scalp.

End up in the PICU, again and then again.  We were basically in the hospital for three weeks in a row with only a few days break in between admits.  Total Major Seizure Count: 54

JUNE
Went downtown with some great friends.  Started a major obsession with the Library of Congress.  Found out I don't have Lupus, I have Fibromyalgia and Osteoarthritis.  Say good-bye to some of our dear friends when they move.  Why does everyone around here move constantly?!  Seizure control is null and void.  Having up to 16 to 20 TC's a day.

 Get pretty desperate and almost Life Flight Cole to Miami.  Instead, we take a risk, drug him up, pack our bags and drive to Florida.

 Stay inpatient for a week and do a major wean of Phenobarbitol while we are there.

 Total Major Seizure Count: 95

JULY
By divine intervention, Brian and Niki get to make it to Hawaii on a trip that has been planned for 6 months with her family.

There is a ratio of 3 adults to 1 Cole while we are gone.  7 Nurses switching off around the clock and help from friends who are salt of the earth.  It was Brian's first trip and Niki's return to "Home" where she used to live while going to school.  We jump off a 45 foot waterfall and try to have a good time even though we are thoroughly burned out.  Niki got a baseline EEG since it had been 8 years.

Slugger goes to 4 Paws for Ability for some refresher training.  We ended up in the PICU, again, while he is gone.  Had a 2 hour status seizure.  We start importing Stiripentol from France since we have tried just about every thing else under the sun.  See the list.  Total Major Seizure Count: 244

AUGUST
We take Cole to Seattle Children's Hospital.

 He has 6 TC's before we leave, 1 at the gate, 10 in the air, 2 at the airport after we deplane and multiple after we left baggage claim.  One of the most stressful days of my life.  He has muscle biopsy surgery to determine he has a Mitochondrial disorder on top of Dravet Syndrome.

 Our summer vacation was flying across the country, having 9 Dr. appointments and 1 surgery in 4 different locations in 5 days.  We even have sleep studies in two different facilities on the same night.

Cole is so drugged from the Stiripentol that he is Zombie-like and he doesn't have a nocturnal seizure, like we had been experiencing every night for almost a year.  It always happens that way :)  My sleep study shows I am sleep deprived.  I paid money for that?!  LOL

 Have a pistachio macaron at Pikes Market that I will remember forever.  Get to see some of our great Dravet friends.  Cole is having 30 to 40 big tc's every day.  Went on a night tour of the monuments.  It was perfect, highly suggest it.  Had an overwhelming display of love from family with "Cole Is My Super Hero" as the theme for our annual reunion.  Total Major Seizure Count: 176

Sometimes I Don't Want To Be A Tiger...

I would really prefer to be a sloth.

Good for me I have a stubborn streak and a dose of perfectionist. It means that things still get done (not every thing), even if I wish that I could just sleep in a tree for 18 hours a day.

It seems like I have been a full-time Tiger Parent lately. I mean, I always am...but the last few months I have been roaring so much my throat is sore.

The trip to Miami was good, but long. I always have a mixture of anticipation and dread when we visit. It usually means something new, which can be good or awful. I do love the team there though, it makes something that is so stressful, semi-enjoyable. I love that we have doctors who will listen to me, feel like they can give me their opinion without forcing it on me and in the end do what I ask. I truly value their expertise and when they suggest that something is or isn't necessary, I take them seriously.

I love that I get to meet new parents there. Some that have been Tigers for a long time, some that are still cubs, wet behind the ears, still trying to get their bearings. We all have something to give each other.

I think that I will save our findings and a full update on our trip for another post. There are some changes on the horizon. It will take months to see if it is even going to work.

With IEP's, Medical Review Boards, new nurses, Cole's condition putting us in a constant scramble to get a handle on it, trips to Florida, my own health deteriorating and everything else that is going on in my crazy life; I also have to give in to the nagging feeling that it is time to go back to school. Yep, in my spare time. A death wish on paper, but I can't deny that I have been thinking about it for a long time and I feel like I need to start now. All so that I can provide better for Cole.

Maybe I should have my head examined. I could be transforming into a jungle cat.

He Is My Friend

I fiddled with the settings on the blog. Hopefully, now everyone will be able to comment. For those of you who have not been able to recently, would you try again for me? Thanks :)

When we ask Cole about everything that is going on, he does not understand the concept of service dogs, or even seizures. However, our recent conversations have gone like this:

Mom: Where are we going?
Cole: We going to see Slugger!
Mom: Cole, who is Slugger?
Cole: He is my friend!

So freaking cute. Truer words can not be spoken.

We can't wait to meet Cole's new friend tomorrow. It is finally here! We will try and capture the magic on video.

Joy

Make an on-line slide show at www.OneTrueMedia.com

That laugh is pure joy.

This Is Your Captain Speaking...

We are going to be traveling through a patch of rough air. Please remain seated and fasten your seat belts.

Life has been a whirlwind the last few weeks. I can barely remember what day it is, keep on getting my addresses mixed up and have not had a full nights sleep in I don't know how long. Yet, we are finally unpacked (mostly) and things are starting to come together in the new house. It is starting to look like a home.

When we were on the plane, I was not so sure it was going to happen.

Leaving was hard. Our friend that took us to the airport, caught me in the front yard with an intense look on my face, standing still. She asked if I had forgotten something. I had to tell her the truth and acknowledge that I was trying my hardest to not cry and let the overwhelming emotion that I was feeling overtake me. I knew if I started, I wouldn't be able to stop. That house is the only one Cole has ever known. We have changed so much individually, and as a family there. We actually found it during Cole's PICU stay, when he was 7 months old. He learned to crawl, walk, and talk there. We celebrated all of his birthdays, Christmases, and everything else...there. He went from having one type of seizure, to seven types there. We started the diet, got the helmet, became hermits, got the Dravet diagnosis etc, etc, etc, there. It was a house full of history for only having lived in it for 2 1/2 years. The house went through a transformation, just like us. We gutted the basement to the cement floors and bare studs and watched it go through a metamorphosis to Cristine's palace. We miss her so much. Knowing that I had a first responder downstairs or just down the road helped me a lot with my anxiety during a trying time. I hope that whoever buys the house, will know just how much love was within its walls. I am sure our neighbors are grateful that we won't have the ambulance visiting our street on a regular basis and our barking dogs have been relocated ;)

As I got in the car, I shifted my focus to the plane ride. I had enough rescue medication in my purse to put an NFL linebacker into a coma. I had paid an inordinate amount of money for special oxygen that I was maybe going to need for about 4 hours. I had a letter from the doctor, the scale, g tube supplies, toys, crayons, KetoCal, and everything else I could think of in case we got stranded or something happened. We checked 7 bags! Not cheap ;) Brian knowing everyone in the universe came in handy and we got escorted through TSA. The x-ray agent had a problem with my die-cast metal pill crusher. I looked like a tool that could be used as a weapon! What? Everyday people don't carry huge pill crushers in their carry-ons? They went through all of my bags and I was totally fine with that. After all of the searching, we were escorted all of the way to the plane and sat down immediately. It went so much smoother than I had imagined. I had totally taken the prepare for the worst, hope for the best approach.

The worst did not happen. We did not need to use the fancy oxygen. Cole did have multiple small seizures and I did give him Klonopin, but nothing else. Being in a small space, having to sit still and be quiet was a struggle for Cole. The men in front of us were saints, because he kicked their chairs the entire time and screamed multiple times throughout the ride. They did not say a word or give me any death stares. Hooray! The in-flight entertainment was broken and I don't think that Cole was a good replacement. He would not stay in his seat, or stay on our laps. He would constantly be standing up or looking through the seats to the people behind us. He also had a manic episode that was most likely a sub clinical seizure. For over 20 minutes he vacillated between giggling like he was being tickled to screaming like he was being hurt. He would switch so fast in between the two that I am certain it was neurological and not just behavior. I was grateful when it stopped, because I was getting ready for that med-induced coma I had prepared for. All in all, it could have been much worse. I had visions of having to load him up with meds and asking the captain to land the plane. A loud, crazy toddler is something that happens on every flight. This time, we were those people.

I think that grandma suffered the worst of all of us. The woman is amazing. If we ever do this again, I am going to recruit more people. She really took the brunt of this move. From the travel to sewing curtains, she did it. Thanks mom! Anyone want to sign up to travel with us to UT this summer? ;) Anyone? Anyone? Bueller? No one? Really? Maybe I'll have to hire out! Hopefully he will have a Miami trip under his belt before we try the cross country thing again.

Cole has not been out of our new house since we arrived. We wanted to let him get used to it with both of us here. Brian starts his new job tomorrow, so I will start to slowly take him out and see how he does in public. Rescue meds only twice so far. It is still confusing to us that he is not having more tonic-clonics. We'll take what we can get though and for right now, that is more small seizures and less drama. I'm not holding my breath, but I must admit it has been nice.

Up ahead, some more rough air, but a beautiful view of the clouds.