Our life dealing with Epilepsy.

Our journey started in July of 2002 our car had broken down and we went to go get it.We left all the boys at home.We got home and were told our almost 11 yr old son Daniel had a seizure and was at the E.R. at Mary Bridge.We raced over there and were totally freaked out.We knew nothing about seizures and Epilepsy.We saw the doctor who assured us he probably would never have another that it was probably a fluke.I later found out he was watching his brother play a car racing game on the computer,so I asked if I should keep him away from the computer and was told it probably wasn't related.We were given the basic instructions and sent home.

He was Supposed to stay up all night later that week for a sleep deprived EEG.He asked if he could use the computer and I told him to go ahead after all the doctor said it was okay.Five minutes later he had another Generalized Tonic Clonic (Grand Mal) we were so freaked out.We were told it was a fluke it probably wouldn't happen again.They were wrong and it happened over and over and over.

It's continued happening for 17 very long years.We met the Neurologist who I didn't care for at all and did the whole myriad of medications.A lot of them had horrific side effects.We tried the Ketogenic Diet,The VNS and even looked into brain surgery.Our son was having seizures so often more than I could even count.He also was having a lot of injuries and countless ambulance rides and hospital visits. 

People we were once close to didn't want to come around anymore including relatives,because they couldn't "deal" with it. It was so disheartening and lonely.

We also started noticing cognitive changes in Daniel.His sister Ariel started having issues as well in her case it started with cognitive decline at 9 it was very significant and seizures started at 12.

 His brother Michael started having cognitive issues as well and also started having seizures.His started at age 14.

 

Our lives since then have been filled with doctors,hospitals,ambulance rides,surgeries,medications,EEG's and a whole lot of injuries.More than I could ever share in a brief post.

 Epilepsy to me is so misunderstood and under reported People don't understand the significant danger seizures can cause.Both Daniel and Ariel were given Make A Wish trips meaning the doctor had to write that their seizures are life threatening.

It has been a very rough road that I wouldn't wish on anyone.There have also been rainbows following the storm clouds.One is seeing how my kids (now all adult age,but impaired) rally around each other when one is fallen and grab the rescue meds,the oxygen, the pulse ox, a pillow or a wet rag to wipe a bloody mouth from a bit tongue.I see the empathy and compassion they have for others,especially those with disabilities.

I see their eagerness to lend a helping hand if needed.I'm so proud of the people they've become despite all their difficulties.

Autumn days.

Hello friends, Sorry it always seems to take me so long to post.
We've been very into the swing of fall/autumn.It is my most favorite time of year.
The start of fall is very significant to anyone who is involved in hockey.We have season tickets to The Seattle Thunderbirds and Daniel plays hockey as well. So fall is the kick off to that season.

 

I took a friend with me who had never been to a hockey game before and introduced her to that and all the goodness that is poutine.Which she also really liked.We had so much fun.

Ariel and I worked on centerpieces for the party.We had candy galore everywhere.I made what they call eye candy jars. I also made boxes. Using Peeps, licorice ,black, orange & yellow jellybeans, orange and black taffy and many other kinds of candy like gummy worms and even threw in some plastic eyeballs. Ariel and I thought they turned out pretty cute. Normally you use much bigger jars for these,but since I had to make so many I decided to just use dollar store vases and candy boxes from Walmart.

 Wish my photos were clearer oh well just quick shots with my phone.

             I also got all my fall decorations up.

           Daniel and Michael with goalie Roddy Ross.

               The Seattle Thunderbirds Team 2019

 After the party Ariel started getting her nerve blocks again.So far she's had two and gets her third tomorrow morning . She loved the Finding Nemo room. These are always followed by Physical therapy.She had to go in her wheelchair due to having  a lot of seizures before and after the blocks .Always fun to see Miss Shelly. She makes P.T. fun.

The guys and I also got some zoo work in.We've volunteered for Point Defiance Zoo And Aquarium for seven years,but haven't been able to do much in the last few due to Ariel's health being so poor.We carved pumpkins and worked Zoo Boo.We did a spider game with the kids.

The guys had a lot of fun playing games with the kids and handing out candy.

 Although Ariel wasn't able to work at the zoo she had fun decorating her pumpkin and house.

 

We also went to the movies a few times.

 My cousin and I also went to The Holiday Food and Gift Fair st The Tacoma Dome.
It was so much fun looking at all the pretty decorations and trying all the yummy samples. I was good though and only bought a piece of fudge. It was good,but so far the very best fudge I've had is sold at Cabela's.They have this old fashioned shop and make tons of flavors my favorite so far was the pumpkin pie.I didn't think it would be that good,but it was delicious.

Well I need to run and get Ariel off to her appointment.I'm hoping to take her to trunk or treat tomorrow or some other fun event.If we do I'll post more pictures.

Summer recap

Hello friends, Sorry it's taken me so long to update.Life is keeping us busy.When I left off Ariel had just celebrated her birthday.She had so much fun that day.It was nice seeing her smile since this horrible monster called Complex Regional Pain Syndrome came into our lives.This summer we did some of our usual outings and events.Went to some movies and took in a couple of fairs and even went to the Tacoma Rainiers baseball game.We are hockey junkies,but hubby loves baseball.So we like to go for him.It's fun for us too.I took Daniel with me to see Million Dollar Quartet.It was a musical about the music of Elvis,Jerry Lee Lewis,Johnny Cash and Carl Perkins.A bit older than both of our years,but we enjoyed it a lot.The singers were phenomenal and sounded just like the people they were portraying and they were also amazing on different musical instruments.We also enjoyed a nice dinner at The Old Spaghetti Factory.

Father's Day we had friends over for a barbecue and my hubby got a new riding mower.

 

 

Daniel continued to play hockey in summer league.

 

He also worked the fireworks stand for The Key Peninsula Veterans.

 

Fourth of July was spent with barbecue and lighting off fireworks and then watching The Macy's fireworks on t.v.

Ariel continued to get nerve blocks,until unfortunately the pain clinic decided to stop them and now her arms are fully flared up.

 

I did manage to take Ariel on a few outings to movies and lunch.

We never did get to the beach though.With her lesions salt water just didn't seem to be the best thing for her.

 We actually found this little bunny on the road he couldn't move and had been injured.So we drove him out to a wildlife rehabilitation place on Bainbridge Island and made a day of it.

The baseball game was fun unfortunately the food was quite expensive and not that great.We all had a good time despite that and bonus it was Friday fireworks night.So we got to see some beautiful fireworks.

 

We went to church on the lawn several times.Unfortunately one of the times Daniel had a seizure there and paramedics were called.Thankfully his doctor goes to the same church as we do and there were several nurses there as well.I appreciated how helpful everyone was even though they were all a bit freaked out.

 Hubby and I also celebrated our 30th anniversary.Breakfast at Hops and Drops and a trip to the gun range.I personally wanted to go to the ocean,but with Ariel the way she is maybe next year.

We also celebrated both Daniel and Michael's birthdays.Paintball for Daniel and laser tag for Michael.They had a great time celebrating their special days.

 

Due to Celiac and gluten intolerances I made both guys cakes this year.I think they turned out pretty cute.

Then we hit the zoo and several fairs.Thankfully Ariel doesn't have to be in a wheelchair all the time.Just when she's having a bad seizure day.

 

The guys hanging out at Whaling Days.

              Loving some mini horses at The Kitsap County Fair.

    Enjoying deep fried butter at The Washington State Fair.

                                          A dizzying ride.

 We even got to go hang out with the T-birds at Dave & Busters.

 

Daniel had a lot of fun playing air hockey with Owen.

 We did end up having a fun summer despite having to do different things to help Ariel cope with the pain of the CRPS.Now we are geared up for fall.I have my decor all out and we are in full swing of hockey season and planning on doing some work at the zoo as well.Ariel finally gets another set of nerve blocks on the 8th of October.Please continue to pray for her.You can also follow her progress at 

http://www.caringbridge.org/visit/arielmarrero 

Thank you for your love,support and prayers.