Sunday, August 28, 2016

Birthday fun!

As I've said on my other pages we make a huge deal of birthdays. We've had some pretty frightening times with our kiddo's and unfortunately lost way too many friends,so we make a huge celebration of each year,tending to celebrate birthdays over the week rather than just a day.Since I haven't used my blog in three years I figured I'd share a few of those special times.
                                                     Ariel's western party May 2015

 The video of Ariel's party it was so much fun.

Daniel's birthday last year was spent at the baseball game,bowling and giving him a bunch of Japanese stuff,since he loves Miku and anime so much.

                   At the Rainier's game.
Michael's birthday last year was spent bowling and playing with the Clouded leopard cubs at the zoo.

This year Ariel just wanted a small birthday with barbecue and a few friends.My little pony themed of course.

Daniel wanted to have a big paintball party this year.I have never done this before,but put on my brave face and did it.What a blast that was,literally.It hurt like you wouldn't believe,but was so much fun I would totally do it again,even though my bruises still haven't gone away,lol!
     The Miku cake Daniel helped me make.

 Michael wanted to spend his birthday taking a walk on the Wetlands.So we gathered up our fortitude after some donuts from Pao's in Tacoma and did the 3 mile trek,then went bowling,had pizza at Westside pizza and played DDR.

Friday, August 26, 2016

Our son the soldier

One big occurrence that has happened in our lives is our oldest at home Nicholas joined the United States Armed Forces and is now in the army.

                       Leaving for boot camp.

Nicholas had chosen to stay at home and help out.So he worked a full time job and paid rent,but was a huge help with helping fix any repairs on the house,lawn maintenance,mechanical work with the cars.You name it he did it.He also was there if dad and I wanted to spend our anniversary away or wanted to go out.He knew medical procedures for the kids if they were to have a seizure and also took care of the animals if we all wanted to go somewhere,but it was time for him to spread his wings and do his own thing.Getting in was no easy task as a homeschooler he had to score 35 points more on his  test just to get in. Not only did he score 35 points higher,but actually scored quite a bit higher and pretty much got his pick of jobs.He had four that he looked into,but chose to be a communication specialist,so he is schooling as of right now on computers and is doing great on all of his tests.This pretty much secures him for life,since everything is so computer based anymore,so if he decides to not reenlist he will have no problem getting a job in the public sector.We decided to throw him a party with friends,barbecue and cake.
It was a nice time.

 Nicholas left for boot camp on April 11th and Daniel and I flew down to Georgia on the 27th of June to see him graduate.They had a family day and an absolutely beautiful graduation ceremony,complete with an amazing band and soldiers doing reenactments.
                       The National infantry museum,where his graduation was held.
                                          Standing in formation.
                            Inside the infantry museum on graduation day.
On family day as well as graduation we were allowed to take him from 9-7pm so that was nice. All he wanted to do was go to places to eat.So we went to the movies and ate and ate and ate.We had a wonderful time and Nick was so happy we were able to go to his graduation.We wished that we all could have gone,but we didn't have anyone to take care of our animals,plus the expense was pretty high.Glad Daniel and I got to be there.
                             Nick showing us the tanks at Fort Benning.

A three year long overdue update.

Wow,I can't believe it's been three years since I've updated this blog.
Time sure goes by fast.
To be honest most of my time has been spent using FB to update little things.
After a whole heap of time spent in and out of the hospital and never ending medical stuff I just got severely burned out.


I was just tired of medical things taking over our lives.
Tired of letting that stuff define us.
Don't get me wrong my kiddo's still have a progressive syndrome that causes intractable epilepsy and severe cognitive decline,especially in Ariel's case,but I just didn't want that to be our focus.
At times I kept hearing myself saying "I just don't want to do this anymore" ,but unfortunately that isn't an option and we are not quitters.
 When there are major seizures or a major medical crisis we deal with that,but then we move on to other things.
I'm not burying my head in the sand and pretending that nothing is wrong,   

but we have to live a life that does not consist of just focusing on all that is wrong,that just makes you miserable and is hardly a life at all.
So like my blog says we are trying to make the most out of life.
The kids still see their Epileptologists,Neurologists and other specialists and are in major genetic medical studies all over the country to see if they can finally figure out this syndrome that they have.I was a little excited that on the paperwork we sent in with our saliva samples it had  Epilepsy with severe cognitive decline listed,so they must be seeing this.
When talking to the Epileptologist at Harborview he told me it is just not normal that people with Epilepsy even Intractable have such severe cognitive decline.
Maybe someday science will catch up with us. 
So the next several blog posts will share what we have been up to.
Some pretty exciting stuff I have to say.
Thanks for sticking around.