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, May 25, 2012

New Developments--Minimal

I will make this quick, I am very tired.  Last night I mentioned how the two little girls went to bed so nicely, well I spoke too soon, they woke shortly after.  Evie spent most the night awake, fussy and throwing up.  Poor thing...I couldn't do anything to calm her other than rock her standing up while singing and stroking her hair.  She finally feel asleep by 3:00 a.m.  Shortly thereafter Alice woke, so I slept with her in her room until she went back to sleep.  When morning arrived I called Tyler to check on he and Natalie, and apparently their night wasn't much better.  We teased each other that we were going to paper rock scissor for the easier shift, home or the hospital. 

The good news is that both locations have improved.

 Evie started feeling better this evening.  Alice began throwing up, yet played happily all day...maybe after what she has been through a little sickness isn't much of anything to her. 
Natalie's status has seemed to ease up a bit, yet no real answers.  Still spiking a fever, feeling sick, and having major tummy trouble.  She had a CT scan on her lungs.  The doctors have been treating her for pneumonia, assuming she has it.  The scan looked great....phew!!  Her lungs are fine, which is a big relief.  Pneumonia can be ugly, especially when Natalie gets it.  While in CT scan I tried to coax the technician into doing a scan on her lower abdomen.  Didn't work, because she needed to have dye in her body prior to the scan.  Should have thought of it sooner.  The doctors will most likely write for an abdominal scan later.  I just know how the program goes....I'm always trying to cut to the chase.

Her pain level has improved as the day progressed.  She passed plenty of gas and had another bowel movement.  The only worry right now is the source of the fevers.  We hope what might seem minimal does not surface as something bigger.

I have been rubbing her tummy, which seems to help...maybe a few foot rubs will do the trick. ;)

More news tomorrow.

Grandma got the girls matching shirts and coloring books.

Grandma Schellenberg, Heidi, Savannah, and Lily came to visit today.  What a fun surprise, Natalie doesn't get to see the Bunkers very often because they live so far away.


I have so many pictures and videos I want to include but keep running out of time and often I don't have the right cords and such with me.  I have a lot to catch up with.

1 comment:

  1. I had cute Savannah and Lily visit my primary class yesterday. They are great girls.