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.

Wednesday, April 25, 2012

Set back for Natalie

We had intended for Natalie to come home today, however, we will be in the hospital for another couple days. She now has positive cultures for Staph Aureus and Enterococcus. It's becoming more serious, but manageable as we are fortunate to be here where the bacteria can be treated immediately. Gentimiacin is a new additional antibiotic she will be taking to help clear the added bacteria. She was not happy when she learned she needed to stay longer. That news happened to be delivered nearly the same time she had to have a nasal swab done. It was an unpleasant moment for her and all others. Tyler called me and suggested that I bring all kinds of crafts and activities when I come to cheer her up, then he also asked that I bring the boys. I thought that was a great idea, so we all came and Natalie was a happy camper. The boys stayed for almost 4 hours then went home with Aunt Amberly. We played games, watched funny movies, painted rocks, and even hid toys in the room and took turns finding them. It's surprising how many great hiding places are in these little rooms. When the boys needed to leave they were sad, they wanted to stay longer. However, it was getting late and they were getting hungry. When Natalie was ordering her dinner Matthew and Blair rambled off their requests...Matthew wanted two cupcakes and Blair wanted a salad with gravy on it. Amberly picked up some happy meals for them on the way home. They thought that was great.

Tomorrow we will find out more about the cultures, and her condition.  We are hoping for good news.
Natalie was giving them a tour of Disneyland on her iPad.  She discovered this darling new Disneyland app.
Painted rocks, Natalie painted an alien rock, Matthew painted a race car rock, and Blair's is a rocket/race car rock with big fire engines.
I asked Natalie if she knew Aunt Amberly's middle name and she said, "Yes, it's Putties"  They are great pals.
This IV pole seems so simple...just two pumps (much easier to maneuver around the room)...I forgot to rotate the picture.
Matthew and Blair were loving the adjustable bed, TV, and the attention.  They thought they were in a hotel room.
Blair taking a ride on the IV pole
Matthew is pretending to be the sick patient.
They were having fun together until I said it was time for the boys to go, they put frowns on to let me know they didn't agree, they didn't even want to smile for the camera.

1 comment:

  1. That stinks! Don't you love the long bacterial names?! Just a little hint...get Natalie's hearing checked soon. The Gentamiacin can cause hearing's happened to quite a few SCID kids that I know. :) I wish you the best and hopefully this weekend Natalie will be home!