Return To Oz

Has it really been almost a month since we were there?  Seriously, kids-things have been super crazy around here.

Cole has been sick since May 7th.  Not during cold and flu season, weird with a capital W.  Hasn't been to school more than a couple of days all month, so he isn't catching things from the germ factory aka preschool.  Possibly caught something on the plane, something else at the hospital, something else on the plane...who in the heck knows.

After a round of antibiotics to quell symptoms of concurrent infections-sinus, ear AND eye...he is still ill.  Had a middle of the night seizure for the first time in a year and a half.  Had two major seizures within 6 hours of each other.  More tests, more tests and no answers yet.  SO-with my little adventure last week into the world of blinding migraines and sick Coley, our world has been more chaotic than normal.  Which is to politely say-unhinged.  I know that you were all just on the edge of your seats waiting for my update, right? ;)

I will tell you about it, before I forget the details.  Like how the paparazzi came to the airport and everyone was taking pictures of Slugger.  Or how Cole and Sluggie got invited into the cockpit.

Florida was it's usual self.  Full of stress and serenity.  Prompting lust towards places where palm trees and plumeria thrive.  Silent worship of the waves and their wonder.  I wish that we could live on my in-laws lanai.  We could seriously be okay with being there all day every day.

We saw a lot of this....

Cole had a major seizure almost every single day we were there.  Slugger did not alert for any of them.  He was always ready to come over and do his job of comforting Cole though.  It still chokes me up when my baby starts to wake up and slowly strokes his best friend.  He looks at him like, "Oh, good.  You're here."

I, myself had some undiagnosed issue which I am attributing to a malfunction of my kidneys, as they are prone to break down at the most inopportune times.  I keep trying to send them love notes and tell them that I need them to cooperate, but they continue to refuse to listen.

We actually almost ended up going to the hospital, before we went to the hospital.  Confused?

We called the paramedics, who would have taken us to a new hospital that did not know us and had no idea about Dravet, so they would have admitted us after being in the ER for hours.  Springing the joint in time to take the 3 hour drive to Miami to make our appointment there would have been virtually impossible.  Thank goodness Cole's brain got the memo, just as we were ready to pack him out the door and in to the fun wagon.  Relief doesn't even begin to explain it.

While we were in Florida, Cole started having new presentations with complex partial seizures.  Only his face muscles would convulse, and there were no leader seizures.  He had more tonic-clonics in one week than he has had in years, maybe ever.  He also had ictal vomitting (during seizure, not after like usual) and it is SO scary.  You need to make sure he doesn't aspirate the vomit into his lungs.  His body is not concentrating, as there is an electrical storm in his nervous system.  So, while you are trying to manage his oxygen, keep him safe, stabilize his body temperature, administer meds, etc you are also having to protect his airway and your mother in laws carpet.  Dravet can make a multi-tasker out of the best of them.

I feel like we are the motley crew from the Wizard of Oz, all seeking new and improved things from the Wizard.  In this case, the experts at Miami Childrens.  In the end, the answer is always within us, and we know all along what we need to do (have resiliency and faith).  Sometimes we just need a little help to remember that we can conquer our fears with the right attitude.  A reminder to have courage, use our brains and to have our heart guide us.  Miami is a wild and mysterious place.  The road was not made of yellow brick, but the journey to get there was treacherous.  Each time we go back, I think of the Tin Man, Lion, Scarecrow and Dorothy.  Hopefully we never get picked up by a hurricane, Florida's version of Kansas tornadoes.  We always meet great people aka good witches while we are there, but Dravet is like the Wicked Witches....if I could only figure out how to melt it or smash it with a house.  By the end of the trip, all I want is to get home.  Maybe I should wear red shoes next time? :)

 We did have some fun while we were there in between all of the seizures.  We spent a lot of time in the pool, and eventually we finally made it to the beach.  Slugger was a little wary of the ocean, but got used to it quick.

 We had some good laughs and Brian even got his early Father's Day present.  All he wanted to do was go water skiing...so I finally sent him to a place that every single time we drive by he says, "That would be cool."  This is his way of saying, "I really want to do that."

After almost 6 years, I finally convinced him that it was okay to go and have fun.  Seriously, it is ridiculous trying to get this man to do something for himself.  Pay $25 and a cable will drag you around for an hour, no boat.  Happy husband.  I can't even buy him dinner for that much in D.C.  He had really sore legs the next day, but he said it was totally worth it...with a smile on his face.  Someone even called him "gangster" for skiing when every other single person there had a wakeboard.  He thought that was awesome.  Points for Nik!

We got to see some of our friends, our family and we celebrated Mother's Day.  Even attempted to take the boys to church, but seizures stopped us.  Didn't stop me from attempting to take a picture of my dapper lovelies ;)  

I have a love/hate relationship with Florida right now.  We only go there for an ulterior motive...to seek medical attention. It is a total bonus that our family lives 3 hours away from the best doctors in the country for our son.  So, I love that we get the opportunity to see them a couple of times a year, when it would not be feasible otherwise.  I love the ocean, I hate that I can't really enjoy it when i am there.  I love that we have an awesome team of doctors and we get to meet other Dravet families.  I hate that we have to go so far to do it.  Back and forth, back and forth.

I guess I am kind of like Dorothy running away with Toto to save him.  Claiming that she is doing every thing possible to protect her best friend when others tell her she is dreaming.  However, if she never would have tried to save him from her evil neighbor, she wouldn't have had an incredible adventure.  Cole is my adventure.

Appearances Can Be Deceiving

Doesn't this look like a great family snapshot? The White House in the background, Cole petting Slugger. Cute, right?

What you don't see....Cole is actually hitting Slugger (once again, he gets the world's most patient dog award). Cole is screaming at the top of his lungs. My child is barefoot, because he has actually taken off his shoes to throw them at onlookers (including his parents) and has even reached down to retrieve them from under the stroller, so he can lob them again. Remember those cute orange Sperry's? Now they are weapons.

Let me take you back a couple of hours, or days perhaps.

We scored tickets to the White House Spring Garden Tour. Got excited. Made plans for it to be a date, with another couple we know. Oooh, grown up, normal stuff!  Still have no nursing on Saturday's, so decided that this was the day to do a trial run with a friend who is willing to learn how to take care of Cole. With a lot of coordination, we are set. Saturday approaches and things are not going so great. Also, weather is not cooperating and it is supposed to be over 80 degrees. Add in our lovely friend humidity who has come back to haunt us, and Saturday's weather is not looking good at all for Cole to be outside. Long story short, knowing full well that Cole was going to have issues if he was outside, I could not feel good about sending him on his maiden voyage to another person's house, they had soccer games. We decided to still go to the tour, after much debate, since we had made a commitment to others and who knows if we will get tickets next year-that is way too far away.  Let's be brave!  Our semi-romantic date turned into a family affair.

We end up procuring two extra tickets, so the other couple brings their son also. Great! We give Cole a little Valium and we head off. As we arrive, right as we get out of the car, Slugger alerts-big time. He is putting his head under Cole's legs and nudging him so hard, they are flailing. He nuzzles my elbow, he nuzzles Brian's elbow, he nuzzles the stroller. He licks Cole. The picture was clear. Seizure on the horizon. So, what do we do? We are with other people...they drove. I give Cole more Valium knowing full well it will make "Angry Elf" come out. With the benzo's in his system, without a seizure yet to break through...he gets really behaviorally challenged.  Sometimes he gets hyper, other times just plain angry.  What are you going to do? Screaming child vs seizing child. There is not a lot of choice.  Heat, overstimulation, being strapped in the stroller, already having a bad week and a major alert from Slugger-he needs the meds or we are going to have major issues.

Slugger did awesome and is still waiting to hear back about a play date with Bo.  I took his picture on the grass, even though there were signs to keep off of it.  I'm a rebel.

Wherever we went, Cole continued to scream.  He threw the iPad, his cup, anything we gave him basically, on the ground.  While Brian and I attempted to take pictures, he was trying to rip the sunshade off of his stroller, or was bucking so hard he almost tipped it over.  At least the other family could find us...just follow the high-pitched wails! :)

It was an adventure!  I am glad we went though.  A year ago, I would have never attempted the crowds, or being outside.  I have a very thick skin, so the annoying on-lookers who were shooting daggers out of their eyes and had a conversation bubble floating above their head that said something to the effect of "Why can't she control her child?" or "How dare they bring that boy here!  It's the White House, not a playground!", they didn't really bother me.  The grounds were lovely and it was one of those, "Never thought I would be here" moments.  Without the screaming and hitting, of course.

With the extra meds, Cole did not have a big seizure.  He calmed down once we got away from the overstimulation and crowds and we went on our merry way back home.  We told our companions-"Hey, if you are going to hang with us, you've got to be able to take the heat!"  They did great-home run.

So while I got to see the presidential putting green and the first family's secluded swimming pool, I am reminded that our life will never be simple.  Just looking at pictures though...you would never guess.

National Walk For Epilepsy 2012

We have been so busy lately with lots going on. House full of company, Jill's House, the walk, spring break, a road trip...I think I need a vacation! :)

We are so glad that we got to attend this year's National Walk for Epilepsy. There were over 4,000 people there! It was hard to get very good pictures of the crowd, because we had to keep moving. I have never personally been to such a large event based around advocacy. It was moving and I felt myself tearing up multiple times. An absolute sea of people, all with one cause, to bring more awareness.I am grateful that Cole is doing better with handling being outside and overstimulation. We could have never done this last year. We met most of Team Dravet before and walked over to the mall. You can't really see our team t-shirts, they say:

Team Dravet

Brought together by chance. Staying together for a cause.

Even though we live here, we do not go to the mall very often, so it was wonderful to be able to see it in all of its glory-construction included :)

Here is Team Dravet, 2012. We had a great turn out this year and hope to have even more next year! It was hard to stay together, but nice to see purple hats amongst the crowd and spot "family".
Speaking of family, all of Brian's siblings were together for this. Something that does not happen very often. We were so touched that they came to be a part of the walk with us.
We got to see part of another family of ours- 4 Paws for Ability! We walked with dogs Bo and, Slugger's sister, Samba. I am sure there were others there! It was great to see so many service dogs in one spot. I must say though, Slugger was one of the most well behaved dogs I encountered the entire weekend. I was a proud mama!

Showing our hometown pride!

It was a powerful thing to think about each person's story and why they were there.
A lot of people had signs and banners. This was my favorite of the day, from Team Epilepsyadvocate.com. It made me really emotional.
I know that Cole will never be society's definition of normal, but I have to completely prove myself every day. In another time, I would not have been allowed to live independently, marry or raise a family. I was glad to have a team that was there to walk for me too.
Cole gave up about 3/4 of the way through. Even though we gave him meds before it started, there were a lot of people and lots of excitement. Plus, no port-a-potties, seriously, for thousands of people they should have considered that all of the museums would still be closed! :) We did not make it all the way to the finish line. The entire walk was over 2 miles, but we did participate in the majority of it. We finished by a vintage carousel that has been on the mall since the 40's. It was good way for Cole to break away from the crowd.
All in all, it was a great day and we are so glad that it did not rain. Thanks to every one who came! Can't wait for next year!

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.

A Mother's Heart

I always knew that I wanted to be a mother.

I am the oldest of five children. I am a Mormon, families are central to my religion. I was raised in a small farming community where having a large family is the norm. I was constantly forcing my siblings and cousins to play house and learn from me (I use the term learn very loosely). When I was old enough, I started baby-sitting. I have just always wanted to play that role, of mother, from the time that I was very small. I knew that I wanted at least 6 kids.

My favorite part of growing up on a ranch was seeing small, helpless animals come every spring and to observe them grow and become strong. Watching birth was an adrenaline rush for me. Helping to care for animals whose mothers were too sick, had died or rejected them was something that gave me the greatest feeling. For years I wanted to be a veterinarian.

However, growing up I nurtured this fallacy that I was broken and no one would love me enough to marry me and want to create a family with me. I had seizures, I was different. So, I then decided that I was going to be one of those ladies who adopted a bunch of children who were not wanted by their mothers. I became a social worker and started my career with adoption and foster care. I always knew that if there was a way, eventually I was going to become a mother.

I progressed in my career and with my job I became the legal guardian for 15 teenage girls at a time. I was going to mother all of the helpless souls out there, even just by pointing them in the right direction. Not bringing them all home like stray animals, but by being a guiding force in their life. Eventually I worked my way through a myriad of positions, all involving taking care of people. Giving them advice in stressful situations, guiding them through complicated processes. Comforting them when they were sick and hurt. Helping to make their life better in some small way. Helping their family members to understand how to say good-bye and coaching them on how to grieve. I continued to tell myself in the back of my mind that I was not going to have the chance to become a mother and so I needed to find other ways to nurture my mother's heart, because the desire was still strong. My job was a lot like being a parent. Not a lot of thanks, but occasionally there was a big pay-off when you knew that you had made a difference in someones life.

Life moved on and I realized that I am not broken and had every opportunity out there that anyone else does. I got married and a few months after I found out that my biggest dream was coming true. I was pregnant...and I was going to be a mother. I was going to have the chance to create something so precious and then guide it on this journey called life. I was going to give this baby knowledge, fun, character and lots and lots of love. I would give them brothers and sisters too! They were all going to have quality educations, get married if they wanted to and then give me grandchildren. I was thrilled and already planning skits for family reunions!Cole came and taught me lessons about motherhood and parenting that I never thought I would have to know. He has made me more than a mother. I am also a pharmacist, advocate, insurance negotiator, exemplary laundress, fundraiser, lawyer, nurse, specialty chef, play-doh expert and singer of television songs among other things. He will never have the opportunity to get married or make me a grandma, but he taught me that I can be a mother. A really good one. I believe that motherhood can be a calling and is very spiritual. I sometimes feel like I have tried to move heaven and earth to give him every opportunity possible, because he is worth it. So even though he is not a typical child and can not give me all of those things that we want from our children, he has given me a gift. I feel so grateful that he gives me the chance to re-invent myself every day.It's during times like these though, the holidays, where my mother's heart gets blue. I have fond memories of childhood, laced with laughter at family gatherings and steeped in tradition. Each and every holiday was spent surrounded by family...lots of it. I have 32 cousins just on one side! I know that when I am older, my special occasions will not look the same as those from my youth. There will be no gathering at grandpa's for blueberry pancakes on Christmas morning. No taking my posterity camping, or on hikes in the desert or to Disneyland. They are most likely to be small, quiet affairs and not the rambunctious, crowded celebrations that I crave.

In a few weeks it will have been a year since I had to make the hardest decision of my life. It was not about a college, a job or even marriage. It was to have a small procedure that would prevent me from becoming a mother, naturally, again. It was the right thing to do, to protect my health and to not pass on my genetic mutation. Brian and I did not take this lightly. We prayed about it, discussed it and asked doctor's opinions. Still, I must admit that this past year has been filled with grieving for this loss. I rarely speak of it and did not even tell my parents until after the procedure. It was a personal decision between my husband, me and the Lord. I have never mentioned it on the blog, but I want to shed a little light on the inner turmoil that has been brewing beneath the surface.

Even though there are some flaws in my DNA, I am genetically programed as a woman to want to multiply and replenish. I can not stop my heart from aching for children. So over this last year I have had to learn how to be happy for family and friends who are moving on with their lives and families. I have had to learn how to not feel hot jealousy towards pregnant women and to enjoy their announcements of impending additions. I had to repent from hating the Duggar mom for being able to have 20 healthy kids :) I have to steer clear of the maternity and baby sections in the stores and just occasionally burst into tears to let it all out. Sometimes it is hard knowing that the only way to get another child is through a lot of money and more than a little luck. It doesn't mean that I am ungrateful for the opportunity I had in the first place to become a mother, just that I grieve that my future will not be quite like I had planned it. Again, I am being taught that nothing really never works out the way I want, but probably the way it is supposed to. Our parents will age and our siblings will start doing things with their growing families and life will move on. It just won't be quite like I had dreamed with small bundles to snuggle and then send on play dates and beyond. Gathering and continuing traditions that I have enjoyed for a lifetime. Hopefully, we can keep Cole for a while, but we both know that eventually we will be alone. Maybe we can start going to Hawaii for Christmas? :)

I know that miracles happen. My dreams of 6+ children have morphed into two, maybe three. Maybe someday, our Ava will come along. Maybe, we will find an egg donor, or there will be some crazy genetic tests that come out (that are semi-affordable) to help make sure that all of my random mutations will not be passed along. There is still hope. Hope that one day I can be a soccer mom, or attend my child's college graduation, pass down my favorite recipes, be the mother of the bride or go to my grand kids piano recital. We are just going to have to be a modern family...and that's okay. But it doesn't mean that my heart is not going to continue to wish for more opportunities to mother. Until then, I will cherish my two baby boys. The really hairy one (Slugger) and, the not-so-hairy one, my precious Nicolas Grant.

Genetics

Cole has a whole lot more than missense mutations being passed down.

The look on my brother's face kind of says, "Feel bad for me."

Don't let it fool you, he's just as weird as the rest of us.

Thick hair, blue eyes, bad teeth, big hearts and loud personalities.

Some things just can't be defined by nucleotides.

I love these people!

Torn

I am sitting here next to Cole, who is twitching like the worms from Mexican jumping beans have been implanted in his body.

I am trying to be excited, but not too excited for my upcoming trip, which is going to somewhat resemble a dine and dash. One minute I am SO excited to take a break from our reality. The next minute, the thought of it just really brings our reality home. Part of me wants to pack my suitcase, days early, and just hightail it out of here for a little while. The other part wants to just stay home with my boys, because if they can't come then I don't want to go; it's just not fair. Cole is so unstable right now, it's just not realistic to travel with him. No one ever said life was fair.

I am trying to get to a place emotionally where I can just be okay with everything. I may not like a situation, but I can't mourn what I can not control. So, I have to leave my boys behind for a significant family event. I'm not going to pretend that it's not hard, but I have to focus on the good things. First, I get to witness my baby sister marry her high school sweetheart. If you haven't checked out her beautiful dress and dazzling smile, take a peek here. Yep, that's my sister...just one of them. They are all pretty much hot stuff. I get to see my extended family all at once and also be there for my grandpa's 80th birthday. I have a huge family. There are 32 cousins on one side and 19 on the other...first cousins. I got to grow up with the majority of them, in the same place. However, with such large numbers the only time I ever get to see all of them is at a celebration like this. I get to re-connect with my hometown and just revel in its small town-ness (is that a word?). I get to hold babies, eat good food and be awed over and over again with my grandparents yard (it's like temple square). :)

I am so excited that I get to hug Erin and Cristina! Two people that ground me, for completely different reasons. Sometimes there are people in your life who you feel instantly connected to their spirit. Other times, best friends come out of the most unlikely combinations. I love these two and miss them every single day. I'm so sad that I'll probably have an hour with each of them, but I most likely won't be able to see them for at least another year...so I'm going to enjoy every second.

There is a lot of good that is going to happen in a few short days. It is going to involve a lot of driving, flying and possibly sleeping on the floor. Events in two states, parties large and small. A whirlwind of go here, go there, drive here, party there. I'm just going to put a picture of my little man and my big man in my pocket and possibly pretend that they are right there with me. I guess the biggest obstacle will be to stop wishing that I could be in two places at once. Is this the wrong time to try self tanner?

Comical

It has just been getting crazier around here...we actually did not think it was possible!

The truck is packed and gone. It was kind of like herding cats. Cole has had more major seizures in the last two weeks than he did in the last two months. My new hard side suitcase that I purchased to pack all of the KetoCal, IV pole, pump, meds, etc just lost a wheel. Brian's flight was cancelled, so we had to go to the airport-bring him home for a few hours, then find him a ride back. The hoops you have to jump through to bring oxygen into an airport are ridiculous! Thank goodness for family members/MDs ;) I am not sure that I want to tackle the process of trying to figure out how to get 8 oz of liquid KetoCal through tomorrow. It is surprising what did not make it on the truck...like the picture on the wall that we pass every 5 minutes. The chaos is turning Cole into a permanent angry elf. Lots of snot and other bodily fluids are still flowing. Camping in your house, really isn't that fun. It looks like we have squatters, just random piles here and there. We should charge admission for the death-defying stunts and clown show that is our life right now.

On the plus side-I have gotten to squeeze in some quality time laughing and crying with dear friends. My stories provide comic relief for others who think they are going through a bad spell. I am helping to plan one of the most beautiful baby showers ever known...it's going to be fabulous! I hit up Lugano one last time before our departure-wow, still best place in SLC, according to me. Got a gel manicure for the first time...so cool. I was scratching things off of the kitchen counter and it still looks fresh.

If you need a laugh, just think of me facing my brother-in-law next week and having to go through that awkward "Hi-last time I saw you, you were partially clothed and unconscious" moment. Me, not him.

Laughing about it to keep from crying about it, is the theme for the week!

Trifecta

Sleep deprived, Sick, Stress.

Perfect combination for seizure. It was a lovely 20 months. We'll just have to start a new countdown;) I was naive to think I could make it through this move without one.

So, on top trying to wallow through one of the nastiest illnesses i have ever had; I got the present of sore muscles and a macerated tongue and lips. Brian and I have never been this sick, together, for this long. Perfect timing, eh? We are counting our blessings and so far Cole shows no signs of illness. If he got this, it would send him to the hospital for sure. Praise the g-tube! I'm beginning to wish that I had one!

Thank goodness for our heaven sent grandma! Without my mom, we would have just had the neighbors come over and put everything in garbage sacks. The body aches and high fevers are rendering both of us pretty useless. With her help, I think we just might make it. I have no idea what we are going to do without grandma and grandpa within a few hours. They have saved us more than once in the last few weeks.

The next few weeks are going to be full of organized chaos, adventure and hopefully a little bit of fun. A much better combination.

Happy Holidays

To all of our friends, family and lurkers. Merry Christmas! Since Cole is light sensitive and can only go outside with his FL-41 lenses, we took a different approach to our card this year. We decided to have a bit of fun. Our friend did a great job designing this card for us. You can visit her shop here (she has a child with Dravet too)! We hope your season is great.
Brian, Niki and Cole