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.

Thursday, December 6, 2012

More Festival Pictures and an Update

Quick up-date.

Tyler took Alice to Primary Children's yesterday to have some testing done, such as a general viral panel and       cultures for strep.  She has been complaining that her throat hurts.  Alice is already on an antibiotic that is treatment for strep, therefore, if she does indeed have strep it would mean that she needs an adjustment in her medications, which may become complicated.  She has been very tired with nausea and diarrhea for several days.  We should hear soon what is or isn't discovered from the testing.

Natalie seems to have improved over night.  Still tired, but the cough has improved and she has been without fevers for three days.  Yeah!

Blair is feeling great and back to school.

The rest of the family is experiencing a syndrome called Partial Zombie.  We keep saying we need to go to bed sooner, but it's easier to say than to do.  Morning still comes bright and early, regardless of how sleepless the night may be.  Morning is a beautiful time of day, even more so when it is greeted with a full tank of gas.

We consider a good nights rest - a night in which we have no recollection of it. :)

Also I rounded up some more pictures of Festival.  Many people have asked if I had more pictures.  Thank you to all for your generous compliments of the tree...and thank you to those who helped make it and those who admired it, and especially to that person who purchased it. :)  We don't know who that is...but thank you.


I wish now I had taken of pictures of each individual ornament and the garland.  It's hard to see in pictures the detail and even harder to see what it all is.

We made a big mess...we came prepared with everything imaginable, except I forgot to bring the tree stand.   

Getting the re-bar secured into the tree was the tricky part.
Little by little, it is coming along.  If you look close you can see three little evergreen trees on the right of the snowman.  Each tree is made of medicine vial caps from the pharmacists.  Nearly 500 pieces on each tree.  They ended up being so almost didn't look medical.

Each flip top cap on this star came off the top of a vial of medication.

These blue caps are used to protect the end of IV tubing etc.  We made lots of these type of ornaments with all different kinds of caps and colors.  Every time I look at these ornaments I can't help but think of Romney/Obama.  This is what we did while listening to politics.  We don't have T.V.  It's great we got so much done while listening to the news.

These orange caps come from syringe drawn oral medications. 

Mom and Dad Schellenberg.   They helped greatly!

Another great quote from a patient and family.  The  quote is inside of an IV fluid bag.

Almost done.

Securing the joints.

My mother Karen and sister-in-law Jessica.  Right hand ladies!

1 comment:

  1. You are so talented and so amazing for sharing all your time for a good cause. You are the best and we miss you.