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.

Sunday, January 13, 2013

Slow and Steady Wins the Race

I've been thinking a lot lately about the tale of the tortoise.  I feel like a turtle, slow and steady.  I keep saying to myself, "Slow and Steady Wins the Race".  The days have been long this past week.  All the children are dealing with something, including Tyler and I.  Tyler has a terrible head cold; I have a cold left over from the flu; Natalie, believe it or not is the healthiest of all, yet continues to deal with the hives; Matthew recovered from the flu then developed a secondary infection in his ear; Blair has croup; Alice vomits regularly with muscle pain and tummy aches, and diarrhea (which could be a result of many things in her current situation); and Little Evie seems to have merged the flu right into a double ear infection and junky lungs.  It's no fun at all.

Last night was almost comic...I was running between all five children tending to each child’s needs.  Natalie was settled once the Benadryl began to work its magic.  Alice kept the pink bucket near her with a Chux pad beneath her...and a watery apple juice bottle in her arm.  I had the thermometer, stethoscope, otoscope, Advil and hot rice bag with me at all times--I was ready.   I was so thankful that I had taken a nap yesterday; Tyler was so good to keep the kids from waking me...surely it made the night's challenges bearable.

We started antibiotics today for Matthew and Evelyn; Blair is taking a steroid for his croup.  Things are going to improve around here. :)  

It has been a very long time since Tyler and I have been ill.  This past week we have been reminded of how blessed we have been to have gone so long without sickness.  We can hardly complain, we have been watched over. 

Again, we are at crossroads with Natalie and now Alice in regards to gluten.  They had been doing very well as we reintroduced gluten, all was well, but now some few months later we are seeing hives on Natalie and tummy aches with Alice.  

We are going to hit it again with both more gluten!  I wish to know 100% what is actually happening with them.  It may take much time and effort to solve the problem.  It's a hard thing to change a diet so drastically.  Surely it won't happen over night.  I have many great resources to pull from...thanks to so many who have provided advice and websites, etc.  

This past week, we have played the Wii A LOT (the only good thing about being sick).  I walked in and saw Blair playing, I said to him..."Blair can you be Mom's helper for a minute?"  He said, "Okay Mom...I'm a good boy even when I'm lazy."


After a couple days...washing syringes is a regular thing around here.

1 comment:

  1. In our house our youngest girl cannot tolerate any Apple juice w/o developing diarrhea...she has a lot of food allergies, so I always attributed it to that. It has a lot to do with her tummy & nutrient absorption.
    Could that be part of Alice's issues? Do you give them Probiotics? It's made a world of difference in our girl. Hope I offered some help.