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.

Tuesday, May 29, 2012

A Midnight Walk

Today was more difficult.  Natalie had to do another nasal swab, which is terrible.  The doctors ordered an Echo cardiogram.  It didn't go very well because she struggled to cooperate with the technician.  Natalie is incredibly sensitive right now and every little thing bothers her and hurts her.  The technician wasn't able to gather the information he needed, because she had a hard time calming down which didn't allow the ultrasound to pick up the proper images.  Therefore, the doctors decided it would be better to do the echo in her own room, where she felt more comfortable.  It was still a struggle, but she did it.  No results yet, however, it looked fine from what we could see.  They wanted to check for vegetations (bacteria) on the heart.

Other tests are pending, however, many have reported negative.  There is a posibility she is having graft vs. host disease.  This can only be determined by a colonoscopy.

Natalie requires oxygen while she sleeps as of late. 

Alice is climbing the walls and feeling great.  She is still having diarreah, so until we pin point her status she will hang out here at her favorite place.  Sometimes it's just easier to have them both here.  It's always better for Tyler and I to have each other, and when both girls are here, we can be together when we need to make hard decisions or jointly help Natalie with things that are hard...especially we love having each other's shoulder to lean on.

We hope, as we have each day this week, that tomorrow brings more answers.

We are missing the kids at home and I continually think of little Evie.  I miss her.  I think my last few posts have been somewhat random and even hard to follow, I haven't proof read any of them, I've been a little sleepy while writing them.

Last night Natalie and I took a midnight walk down the empty quiet halls of the hospital. We are encouraging her to walk and move around so her lungs can stay healthy. She and I had a great time. She asked to see many places that we talk about, such as the doctor's offices, pump room, life flight, main super computer for the hospital, tiny baby unit, the City Lights From the Sky Walks to the University Hospital and the Moran Eye Center, The Board Room, The Nutrition Room and more.

Our midnight walk is a memory I will always treasure.  The quiet uneventful memory that leaves a lasting impression.


Alice hiding in the closet

Staying up late and being silly
Cousin Cooper came to visit....great time

Alice and Cooper

Cooper didn't want to go least didn't want to leave the car

Natalie's Echo, 2nd attempt which was successful in her room, we tried to make the room as dark as we could so the technician could get a good picture.

Echo, almost part.

Alice checking her own heart rate

The night view (I tried to zoom in..didn't work very well)


  1. Thanks for keeping us posted. Natalie you are one strong girl. I am so happy you have a view of the Temple from your room. I hope you get feeling better soon!


  2. We are praying for answers to come quickly!! Your girls are so positive! I am so impressed!

  3. I'm glad that you keep us up to date. You guys are such great examples to me. I've learned a lot about enjoying the little things from reading your posts. Thank you so much.