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.

Friday, August 31, 2012

Girls are doing well and Blair goes to school

Day 254-Natalie, Day 227-Alice

Natalie and Alice are doing great.

Natalie's cough has improved since we started using a minimal amount of albuterol.  She uses a nebulizer on occasion.  Hopefully this is all she needs.  She still requires oxygen while sleeping.
Alice continues to improve.  When she eats wheat or dairy she has loose stools again.  We have decided to eliminate (as much as possible) those items from her diet until her gut is completely healed.

Blair started school this week.  He likes Kindergarten so far!  When I picked him up from school two days ago, he said, "I met a new friend today."  I asked him what his friend's name is, he said, "I don't know, but he has a plain shirt".

Evie is becoming very vocal.  She has learned that screaming can get her what she wants.  Tyler and I fell into this trap easily.  Anything to quiet a screamer, right?  Well, now we are trying to undo this process.  Sometimes we say things out loud...thinking no one is really listening; of course until you hear your child repeat it.  This morning Evie was screaming; we overheard Alice say, "Oh garbage Evie, stop screaming!"
Tyler and I looked at each other with a uhhh sort of look.

It may be a good idea to be a little more cautious with our words or how we respond to a certain situation.  These times of observation seem to sink in more when we are flustered or react with less control...which can happen around our house.

Mostly, problems can be resolved with simply just communicating better.  Recently Evie was screaming again, I looked down at her without saying a word holding back my urge to pat her mouth with my hand in disagreement.  I noticed that she was doing something funny with her face.  It took me a minute but I realized that she had puckered her lips for a kiss.  Once I kissed her, she ran away as happy as can be.  So thankful...I was, that I took that moment to understand what was really happening before denying her the attention and love she had solicited.


First day of Kindergarten...Blair used this backpack in joy school, he had picked it out himself.  He pretended he was flying to school.  So cute!! 

Matthew helped Blair get dressed.  When the boys came up stairs they were excited to show us that they were twins.

Saying good-bye to the girls.

Mom and Blair

Taylor and Blair
Blair, Sophie and Taylor

When I came in to help Blair find some pants he was playing a trick on me.  He wanted me to grab a pair of pants from his closet and when I did so he would scare me.  I told him to stay there so I could get a picture.  I thought it was so funny.
Alice was helping Mom help Blair.  By the looks of this picture you can guess who was next on my list to get ready for the day...or not. ;)

Okay, how many Binkies does one baby need?  Obviously at least five.  Evie loves to help me unload the dishwasher.  She immediately sorts through the utensil tray until she has retrieved all the bottle tops.  We always know where she is because there is a little squeaking sound that accompanies her.


  1. absolutely adorable!! I love your kids!! I am so glad to hear the girls are day at a time :) Congrats!!

  2. This post made me happy. Happy for your girls improvements, happy for Blair new adventures in kindergarten, happy he & Matthew were twinners!, happy that Evie is so adorably affectionate. You are a remarkable woman, Lisy. You & your family are very special & very loved. I'm sure do love you!! Happy Birthday tomorrow!!!!! We'll be calling so we can sing to you! Prepare your ears! :)

  3. Lisy...I didn't know you had a blog! Oh how I wish I had known sooner. What an inspiration you are each and every day! I remember looking up to you so much on my mission and I still do! I just want you to know that you will be in our prayers and my heart breaks for what you have been through and are going through. I remember running into you at the store in Utah, and I really had no idea what you were going through. I am so sorry for not being more of a friend. Thank you for sharing your story. I love ya! Happy birthday!

  4. is sophie an arnold by chance?