Saturday, April 28, 2012

Celebrating a life.

Hello friends,well we are officially 21 days out from Ariel's crazy Aloha Carnival birthday party.Why do I say crazy,well sort of because this party has taken on a life of it's own.

                                                                That's okay with me though,because I want Ariel to feel like a princess on her special day.

In August of 2011 after much testing we found out the she,Daniel and Michael share an unknown Genetic Epileptic Syndrome that is progressive.Unknown meaning we do not know the exact gene mutation,but we know it's there.Most likely a Sodium channel mutation on the brain.
At the time The Epileptologist said Ariel was having seizures every 2-3 minutes.We had no idea.We knew she was having seizures a lot,just not that often.The progressive part was just recently made known to us,although didn't surprise me too much as both Daniel and Ariel's seizures have gotten a lot worse as they've gotten older.

So that's part of the reason we are having this big party,not to mention she's turning 18,which is a big milestone in her life.We've been so blessed that we've had so many from our church and friends offering the use of tables, chairs &  awnings and just help.What a blessing.

Icing smiles is doing her cake.Blackbird Bakery is actually going to come here an assemble it.I don't know all the details,just that it will be three tiered with a waterfall and bright tropical flowers.Ariel is so excited.

We are also having a card drive for her,for those that don't live here and would like to participate in making her day more special.

Any cards for her can be sent to P.O. Box 551 Burley,Wa 98322

Emergency room fun(If there really is such a thing)

Tuesday night Daniel's had another of his bad Grand Mal seizures.No matter how many times I see them I never get used to them.I hate the sound his body makes forcing the oxygen from his lungs.I hate watching my son turn different shades of blue and purple and I really hate seeing all the broken blood vessels all over his body from convulsing so hard and seeing all of the bitten up tongues and injuries he sustains with each one.

Mainly the reason we got to the E.R. is because of Daniel's constant shoulder dislocations 51 at this point.Sometimes he can get them in himself other times not and so we have to go to the E.R.Thankfully they all know Daniel there and are usually pretty quick to get us on our way.This particular day we got stuck in the trauma room,where it's 100 degrees and there's no t.v. and so absolutely nothing to do.

               (This is the old fashioned handlebar stache)

Daniel pulled out his phone and started entertaining all his doctors with his various mustaches.I just love his attitude.He never lets things get him down,but just sort of rolls with the punches.

        (I called this the grandpa stache,someone else said                        it  looks like the Santa Claus one.)

            In this pic I snapped him in an Absence seizure.

                         ( this is the Mucho hombre stache)

                                        He's my hero!

Some of the toughest battles and some of the bravest warriors.

Hello friends,Our Caringbridge Family and the medical world has been hit so hard in the last year.We have lost so many precious children it is heartbreaking.

This journey has never been easy.When your child is first diagnosed with a long term medical illness you feel as if you have been literally drafted into the trenches of war.

You almost have to learn a new vocabulary,and a totally new way of life,but being in the trenches you get to know other families and other parents who are also battling along side you and a special comradery is formed.Even if they are battling a different war then you are.

You begin to feel each others pain and you hurt when they hurt.You celebrate the triumphs and you're also devastated by the blows of bad news.

There is a young man and  two special little girls that I am thinking of right now.A little sweetie named Melanie sadly lost her battle with her lungs and went to be in the arms of Jesus.

As did another little sweetie named Emily.Emily was very difficult especially,because we had actually met her in person.We met her and her mom Sara at Disneyland last year.To know Emily was to instantly fall in love with her.We had a great day getting to no one another and going on rides together.

A special young man named Billy sadly also lost his battle.These children are free no longer suffering and in pain,but their parents need prayers as they are heartbroken over the loss of their precious children.

It's also been really hard on Ariel,as her understanding is limited.I've wiped many a tears from her and was getting quite concerned with her sadness and so we decided to do something about it.we would never walk away from caringbridge.This has been one of the homes on the webs we've grown to love since 2004.Instead we made a memorial tree.Dedicated to all those we've known  whether in person or just talking with their families via phone or on the internet.

Ariel and I tied on pink and blue ribbons in memory of either boys or girls that had passed.We also put a cute little Hello Kitty for Emily,who loved Hello Kitty

                       And an adorable little frog for Curtis.

Here are more of the names on our tree:

                                      Billy Gerlach

Amanda Brady

                                  Reagan Joy Rodriguez

                       Chelsea Hutchison
(Her parents started The Chelsea Hutchison Foundation to bring people awareness of Sudden Unexplained Death in Epilepsy Patients of S.U.D.E.P.)


                        Curtis Shubert

                        Donna Evans

                                     Jayden Kendrick

                         Haley Vincent
She could sing like a bird and actually had sent us a post card from the beach just a few days before she passed.That will always be special to us.
(Hayley's parent started The Hayley Vincent Foundation:To bring awareness of liver related disorders.)

                          Emily Evans

                    Samuel David Hovanski

                                     Melanie Canete


                       Memphis Seaton

              Lindsey Steltenpohl & Eithene Hillard
            Two little girls that fought tough brave battles.

Jacob Duckworth A triplet and
One of the first Caringbridge kids we got to know.

                                    Nicholas Boggs

(His parents are raising money and awareness for Fanconi Anemia)  I loved listening to Nicholas on youtube.He loved The Lord and often sang hymns.

Ariel ready to release balloons on Emily's Memorial.

I think having the tree is a constant reminder of how precious life is.

Saturday, April 21, 2012

Saying goodbye.

This has been such a rough week for us between a mountain of appointments and being sick,but the toughest part has been saying goodbye to our dear sweet little friend Emily Alexis Rose Evans.  When you've been on Caringbridge for as long as I have many people become like family.You often form an instant bond,because we are all battling some of the same battles. I actually had the pleasure of meeting Sara and Emily last year at Disneyland.It was such an awesome experience.She living so close to there and having passes took me around to places I had never been,like the medical center.It was such a fun day and one look at that little beauty with the biggest smile and you fell instantly in love with her.Her leg would always kick with excitement whenever she saw a ride or something she really liked.One thing she really loved was Hello Kitty.She was the Hello Kitty girl.Always with a big bow in her hair just like Hello Kitty.

My heart so breaks for her family that adored her so much.Ariel has had such a rough time of it.She had already lost her dear little friend Melanie a couple of weeks ago and then to lose Emily too was too much.I was getting quite concerned about the toll emotionally it was having on her after seeing her cry all day long.We decided it would be a good idea to make a memorial for those kids and families that we've loved and lost.A way to never forget,but also help ariel with her pain.So we made up this tree for them.

We tried to put some personal touches as well.Like a couple of Hello Kitty's for Emily a little froggie for Curtis and ribbons with each child's name on it.Ariel has been so happy working on it.

  We know that Emily is in a better place no longer in pain or   suffering from The Mitochondrial Disease that she battled so fiercely.She has a new whole glorified body,where she can speak,run and play.


John 14

1Let not your heart be troubled: ye believe in God, believe also in me.
2In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you.
3And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.


                      We will miss you little princess!