Intractable Epilepsy and life in a bubble

Recently this statement has come to my attention.Do children  that are on seizure precautions live life in a bubble?

Having kids with a devastating seizure disorder is such a balancing act.You often feel like you're walking a tightrope ready to tumble over at any minute.

On the one hand you want them to have a full rich life,but on the other hand you don't want their lives to be shortened while allowing them to have that full rich life.

In 2009 when Ariel had,had a really bad Staus Epilepticus event and was in the hospital,they had required a CNA or nurse sitting by her side the entire time,we had this one gal come, she was telling me about her brother who was Epileptic.

She was telling me how her mom thought it was stupid to put Epileptic kids on seizure precautions.I'm thinking "really you're telling me this right now with my daughter so ill from having over 15 convulsive seizures in a row and in PICU."


Anyway she went on to inform me that her mom had never put her brother on seizure precautions and that her brother is in a bit of trouble right now.It seems that even though he is Epileptic he insisted on driving and had a seizure and killed a woman and severely disabled her daughter.

Talk about burying your head in the sand.She actually seemed to blame the victims in this case.
I could be like that ostrich and pretend that my kids don't have limitations and allow them to do whatever they want,but for one thing, I am their parent and it is my job to help guide and protect them.
Allow them to do anything at what cost?

This picture was taken the other day.It was a beautiful day and so we went for a walk down around the marina.Ariel and I went to the restroom and when I came out Daniel was down on this dock standing by the water.I had to explain to Daniel the risks of him being by the water unsupervised.He could very easily have had a seizure and fallen into that water and drowned.I will gladly take him down by the water if I or his older brother or father are there,so that if he had a seizure we could keep him from falling in.

As it was he had two very bad seizures that night.Daniel has had so many injuries from falling and getting hurt during one of his Generalized Tonic Clonics or (Grand Mals.) In this picture he had almost broken his nose.We have so many slings,shoulder immobilizers,neck braces,boots you name it in our closet from all the many injuries he's sustained through his seizures over the years.

        " I have Epilepsy it doesn't have me."
One of the reasons I have always despised this statement is because of the down playing the damage that seizures and Epilepsy do.They wonder why they barely get funding.
It's because of the misconception most people have.Most people think you take a pill and your seizures are controlled.





I understand this statement is sort of a state of mind thing, not letting your Epilepsy define you and all of that,but tell that to the parents of the kids that have died from S.U.D.E.P.(Sudden,Unexplained,Death in Epilepsy Patients) 

That's why people like The Hutchison's have worked so hard to educate the public on the risks of seizures.Because they were never told of the risk of SUDEP and unfortunately lost their precious daughter Chelsea in 2009.

They blessed us recently with EMFIT monitors that go under the kids beds to alert us in case they have a seizure in their sleep.

We try and let our kids have a full rich life to the best of their ability.I'll admit it does hurt when people seem to imply that having your kids on seizure precautions means you don't let them have a life or you are making them live their lives in a bubble.We want them to have a full life,but also a long life.

The kids new prayer page.

This is the kids new prayer page:

http://www.facebook.com/#!/PrayForDanielMichaelAriel


Please stop by it and hit like.

Walk around the marina and E.R. trip.

Yesterday was an absolutely beautiful day and since it seems our nice days are so few and far between anymore I took the kids for a walk around the marina.It's such a nice little area around the harbor.

                   It was nice to get out and get excercise.After the walk I took the kids up to Costco to get some frozen yogart.

That evening Ariel and I went to ladies Bible study.I cannot tell you what an absolute blessing our church is to me.I love all the families there.We have so much fellowship and friendship it's just amazing,something I've never experienced.Anyway during the day Daniel was blanking out quite a lot during the day an indicator that a big seizure is coming.After our Bible study I called home all was good.When I got home I was informed Daniel had,had another bad Grand Mal.

After tugging on his arm a bit we realized his shoulder would be stubborn,so we went to our local E.R. the one you usually never wait in and always get a room.Well I knew one day that would change.They all pretty much know Daniel there.As we were waiting to be triaged the triage nurse came up.This gal I've had issues with in the past.Poor Daniel looked so bad he had petechia all over his face and shoulders from the convulsion being so forceful.

Anyway we sat and sat and sat.After reading her triage notation I could understand why.Thankfully Dr.Campbell came out and said Daniel did you dislocate your shoulder again? Wow,it's pretty bad when they know you that well.He had them take us to a triage room to give him a shot of Dilauden and hopefully relax him enough to pop it back in himself.While waiting I read her triage not it said shoulder complaint(GRRRR!!!!!!) Really not dislocation from a severe shoulder.That made it sound like he had pulled a muscle.


I think the doctor must have gotten on her,because she was nicey,nicey after we got in the triage room.

I don't know what the deal was last night,but everybody and their brother were in the E.R.We sat in that triage room for over two hours.Finally they came and got him into a room.

Finally after two shots Daniel finally managed to pop it in himself.Then we say and waited and waited and waited some more.Daniel knocked out from sheer exhaustion.

         The doctor finally came and saw us at 3am.He's actually my favorite E.R. doc.I understand they were just slammed last night,but I was so tired.He wrote Daniel a prescription for pain meds and we fiunally got home at 3:30  in the morning.


Unfortunately new meds never work for long.Please continue to pray for Daniel.

Resurrection Day.

Daniel,Ariel and Michael all dressed up for church.They look so grown up.I know they are,but it's hard as a parent to come to the realization that your kids are not little anymore.

We had some great music at church

Followed by a wonderful sermon comparing the passover and the Resurrection and talking about the ultimate price Jesus paid for us.

After church we came home and made brunch.I made eggs benedict and cinnamon rolls.


After that the kids played flag football outside.I made dinner ham,escalloped potatoes,green bean casserole and rolls.

The pics aren't the greatest they were just taken with my phone.After dinner the kids went outside and played flag football.It was a beautiful day.Unfortunately Daniel got a migraine and Ariel wasn't feeling all that great,so Nicholas,Michael and I went to evening service.

It was pizza night after service.We had Little Ceaser's.As pastor said "We are having five dollar pizza that tastes like five dollar pizza."
After church we came home and had chocolate and banana cream pie.It was a wonderful and blessed day.

Ladies Spark's Conference ( trip around the world)

Our church went this conference last Friday.I had never been before,so didn't know what to expect.I had the funnest time and was blessed beyond belief.


Besides having good food and a wonderful devotional speaker we played these games that were so creative and fun.In the beginning our team leaders were given a very large passport.

The goal was to get stamps from each of the countries.If we were the first to complete our passport we would win the prize.

First stop Italy.Here we had to make our pizza dough cover the pan,well it seemed easy,but after so many groups adding flour it was not very pliable at all and kept falling apart.The guys and gals at the stations did a great job with accents.

My pics are not that great.They are from my phone and I had to snap and run.

Holland where we had to see if we could fit in the wooden shoes.I could actually fit them!

Australia bus tour.Unfortunately this bus had a lot of yellow jackets on it for some reason.But the game was fun.

This was the customs bus in England.We had 1 min to dig through the suitcase and find the contraban item.We had to do this one twice as we couldn't find the car charger the first time.

Mexico where we had to listen to the ladies question in spanish and repeat the answer in spanish.

The French bistro that's why it's so dark.We had to look at menus and find among the french and english words the ones that where non food related.

Our associate pastors wife looking intently for the words.

Africa where we had to listen to animal sounds and write the correct animal.Not as easy as it sounds.

In between the games we had wonderful food,music,skits and devotional time.It was so much fun I can't wait until next year.The them next year is somewhere in time,so you can dress old fashioned or futuristic.

Bowling fun!

Yesterday I took the kids bowling.It's always fun to go bowling and get snacks from the restaurant.A pitcher of soda and several appetizers.It was a fun day for all,despite my terrible bowling score.