Wednesday, November 7, 2012

Death Grip

I have no pictures for this post but it's something I wanted to record.

I have to give some background first...and I realize it might seem rather silly to many of you :)

I have never loved or felt very comfortable driving on the freeway.  As a matter of fact, I was not anxious to get my driver's license when I was 16 period.
Over the years I have not had many reasons to drive the freeways but there have been times where it was a must.  Soon after Josh was born we moved to Park City for an internship.  Josh's doctor's appointments were still back home though so I did make that trip 2 or 3 times.  I was white knuckled each time.  
I don't like semis, I don't like merging, I don't like the high speeds, I don't like the careless and overconfident drivers, I'm terrified of a tragic accident.
With all of Ben's appointments in Salt Lake over the last few years, I did become a bit more comfortable. I have always been a stickler on the speed limit.  I feel strongly that it is a LIMIT, not a vague suggestion for speed.  I did come to realize though that while traveling the freeway, it is much safer to "go with the flow" than try and stick to the limit.  That realization also eased my anxiety as I was not constantly looking at the speedometer and worrying about the cars passing me on the left and the right :)
So yes, a little more comfortable, but still a fear.

I have a memory of when I was in college and dating a guy.  I was getting a ride down south to his family reunion with one of his cousins.  I sat in the back seat with her baby while she drove.  At one point the baby got very fussy and she asked if I would drive so she could sit in the back and try and calm the baby.  She had no idea of my fears.  I agreed with a pounding heart.  I climbed in the driver's seat and pulled back onto the freeway.  As I merged I somehow came within inches of a semi.  It was very scary and I'm quite sure the only reason we weren't in an accident was because of Divine Intervention.  Of course this incident only added to my issues. 

Back to the present, Ben had a follow up diet appointment a couple of days ago in Salt Lake.
Back on the freeway and a death grip on the steering wheel.
One thing that put a smile on my face during the drive was the continuous Christmas music being played on the only radio station I ever listen oldies station.
Ben was an angel on the way down.  He fell asleep about half way there and didn't wake up until we were in the city.  I had a big tote bag with my diet information binder, our two lunches, water bottles, my purse, Ben's diastat and diaper changing stuff.  I carried that along with Ben's helmet and Ben in my arms down the long hall of PCMC.  When the nurse took us back to weigh and measure Ben she asked if I rode a motorcycle.  I was a bit confused at the question and responded, "No, should I consider it?" thinking she was referring to my armful of paraphernalia.  It wasn't until we were driving home much later that I realized why she asked that question...the helmet :)

We had a positive visit with the dietitian and doctor.  They suggested the possibilities of adding a medication to the diet, increasing the ratio of the diet, taking him off the diet and going to a medication...
My ears certainly perked up at the mention of quitting the diet.  They told me that it was up to me and Andy to decide what to do.  I stated at least three times that we were happy with the improvement that we had seen and that the diet was worth it for the increased seizure control we have gained.  I would hate to go off the diet and have Ben go back to having hundreds of myos a day.  They discussed it with me extensively and then sent us off to the lab.  When they took us back, we were asked if Ben usually put up a good fight with blood drawing.  I told them he did so they went and got another woman to help hold him down.  They turned on cartoons for Ben and went ahead and drew the blood.  When they stuck him he tensed and looked very worried but didn't shed a tear.  He was such a big boy and we kept reassuring him as he looked at his arm and then grabbed my neck with the other arm in a death grip.  It took a couple of minutes to get all the blood they needed and he repeatedly gripped my neck.  I was just thrilled that they got the vein on the first stick.  Ben has a history of having not very available veins :)
He chose a little giraffe from the toy drawer and it wasn't until we were on our way down the hall that he started sniffling, holding out his arm and signing "hurt".  Still no tears though.  We found a table in the cafeteria and he ate his lunch like a champ.  When I pulled out my sandwich and took a bite he made it clear that he wanted some too.  I hadn't been concerned about eating in front of him because he really has not asked for anyone else's food in a long time.  When I kindly told him no he threw a fit.  I tried to calm him but he continued to scream so I packed up and we went out to the car.  I was worried about his tantrum adding anxiety to my already stressful drive ahead of me.  Luckily after he had dumped 1/2 a bottle of water out onto the floor of the car and taken his shoes and socks off and thrown them he stopped when I handed him more water.  Again, eventually, he fell asleep and towards the end of the drive my death grip relaxed.  We were almost home and we had survived.

4 1/2 big seizures today (one was just a couple seconds long...but it was a tonic clonic) .  He's never had that many in one day.  It's making us wonder if we did something wrong recently or what is to come shortly (illness etc...)

Speaking of Dravet Syndrome...check out this clip done by a local news station on a fellow Utah Dravet family.


  1. Sorry you had to take that drive alone.
    Yikes, 4 1/2 tonic clonic seizures in one day--is that a record?
    Quite the story of the little boy and his service dog. Is there one of those in your future?

  2. Way to be a trooper. I've never liked driving either. Poor Ben,I hope those seizures stop happening so often!

  3. Aimee, Just getting around to catching up on some blog reading. You continue to amaze me - such a wonderful mom and all around amazing woman! Please remember that I pray for you and your whole family very often!