The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, December 23, 2012

A Week's Worth of Posts

Update on the Girls as of Dec. 23, 2012

I was able to converse with neurology regarding Natalie's seizures.  We decided to leave her medication the same and carefully document every seizure that we can.  She was having a rash of them until I called to speak with the doctor, then they went away.  Therefore we will let things rest unless they stir up again.

Natalie has figured out many tricks that help her deal with her seizures.  If they occur at night she calls for Matthew because his room is close.  He will jump out of bed and rub her back until they go away.  One night I heard her yelling, "Matthew, Matthew, hurry, Emergency, Emergency!!!"  I quickly came to help her.  I was proud of her for seeking help without getting up to walk.

She has always found security in Matthew.  It's a sweet thing to see how he cares for her and comforts her when she needs it.  Four years ago, when Natalie came home from the hospital after three weeks on life support, she held Matthew's hand every moment she could for weeks.  Her memory of previous relationships were erased but the relationship between her and Matthew remained.  Tyler and I were thankful that she was able to have someone to cling to for comfort until her memory began to return.

Alice continues to puzzle us.  She is vomiting one moment and fine the next.  She is still scheduled to receive the first of four treatments the day after Christmas.  We pray that all will go well.

Painting Christmas gifts.

Alice calls herself Purplicious...everything has to be purple...even the dress she is wearing.  It's backwards and two sizes too small.

Dec. 19th

Matthew and Blair had Christmas programs at the school.  Matthew was in the Gingerbread play (actually it was a week ago).  It was the cutest thing.  He was so excited and practiced his two second part over and over, each time with more animation.  He made us promise that we would be there no matter what.  It was worth all the promising.

Blair's Christmas program was wonderful as well.  It was cute to see how quietly excited/nervous he was to preform.  I asked him if he felt ready; we have been working on memorizing a poem, in which he did memorize, however, just before the program I asked him, "Okay Blair are you ready to recite the poem?"  He said, "I don't have to remember all of it...cuz everyone else will...I will just say what they say."
I thought to myself...uhh that is something we are going to discuss in more detail.

We have been struggling with our Christmas tree.  Only one strand of lights is working.  The tree is missing some's the first tree Tyler and I purchased when Natalie was a baby.  I found it at Wal-Mart for $9.00 so I shouldn't complain, however, for some reason (in which we know) this year it looks uglier than other years.  Evie has made it her agenda to terrorize the tree.  Several ornaments are broken and what is left are on the top half of the tree.  Blair suggested that I put a force field around the tree, to keep Evie away.    The kids don't mind the ugly tree, they think it's awesome and exciting.

We are looking forward and hoping to be all together this Christmas! :)

I quite trying to make the tree look good.  Once I find an ornament I just put it away--not back on the tree.  It's a vicious cycle if I replace it to the tree...Evie is a determined little girl.

The Gingerbread Play

Adam and Matthew

Matthew has become great friends with Adam

I love this Gingerbread boy

Looking good Blair

The whole Kindergarten class

Dec. 20th

Today is our Anniversary.  Tyler and I have been married 10 years.  We decided to take the kids sledding.  They had a well as Tyler and I.  We figured sledding was a great way to celebrate ten good years and five great children.   Tyler and I love the snow and everything about it.  We both grew up skiing, and even spent our honeymoon skiing.  The second time I met Tyler was at Jackson Hole on the best powder day in history (in my mind anyway).  He is an awesome skier, I was impressed....four long years later we were married.

Ice feathers on the lake...we walked on the ice, it was neat...very sturdy.  The  children were fascinated with the whole thing.

Happy to be sledding.  I have some great videos of the other children , however, I will have to post them later.  I am having technical doesn't take much for me to experience this type of difficulty ;)

Dec. 21st

Happy Bone Marrow Transplant Birthday Natalie!!!  One year ago today she received her transplant.  It seems to have passed so quickly on one hand and on the other it seems so long ago.  It was a sweet moment yesterday when we were in the mountains sledding with the kids, thinking that one year ago Natalie was too weak to even walk and talk, and now she is laughing and playing in the snow...continuing to run her sled back up the hill for another run.  I was a very special moment for Tyler and I to witness.

We asked what she wanted to do to celebrate her Bone Marrow Birthday.  She chose to play games as a family.  We played hide n' seek, UNO, and Mustard Ketchup.  Many of the games we play are invented by the kids...usually Natalie.  Mustard Ketchup is a favorite of mine.  I have no idea where the name came from, because mustard and ketchup are not involved in the game.  It's a game of tag, in which you claim a sofa or seat for safety until someone joins then have to leave and find another place to sit before the person who is "it" tags you.  It's a great way to burn energy.  We love it.

We felt it appropriate to give Natalie a haircut on her year anniversary considering that she has grown a killer mullet.  I guess it crept up on me.  I didn't realize she had such a mullet until we had a grown up 80's game night with some neighbors and someone came wearing a superb mullet.

She loves her new hair cut.  She tried to convince me to make her bald again.  I talked her out of it :)

Once I cut Natalie's hair I was feeling pretty good about myself and my untrained scissor hands, so I gave everyone a hair cut.  Evie's new cut might just be the most unique.  I should have consulted with a professional.  She's cute anyway, so I will chalk it up as a learning moment.

That little pony tail is about to be snipped, Evie wouldn't hold still for a second.

Not sure what to think.  The mullet is gone but now I have another  problem.

Evie's first hair cut...such a cute little curl.
Here lies Natalie's mullet on the counter

I figured this was the easiest way to do it.

Not too shabby...I think I did a great job.

Alice didn't need too much cut.  It's so curly that it blends well enough.  I just snipped a little bit.

Alice's curl, and fist hair cut since transplant.

Looking Good Blair!  Matthew ran off before I could get a picture, I will  take a picture of Matthew  tomorrow and add it to this post.

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