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, December 9, 2012

Negative Strep Test

Alice's strep test came back negative...thankfully.  Labs also showed that Rhinovirus is positive again.  This virus can stick around for a long time.  It's quite obnoxious.  For the average person it is the common cold.  For Natalie and Alice it means many sleepless nights, including diarrhea, nausea, fevers, coughs and headaches around the clock.

Currently Alice vomits between 3-6 times a day and has between 2-4 liquid diapers a day.  Natalie usually gets the hives on average 1-2 times every two days, due to panic that she may have to go back to the hospital (we think--it could be from something else too).  She also spikes a very high temp between 103-104 degrees every few days.  Our question is---could all this be from a silly cold virus?  Or is there more?  Tomorrow is clinic and we have decided to take both girls in to run some further testing, surely Natalie will not be happy about this.  At least we may be able to eliminate some possibilities and hopefully gather peace of mind that what we are currently doing is the right thing. 

It is a very good thing Tyler and I have each other, between the two of us we can function at the capacity of one.  For now one is sufficient, it's enough to continue on.  We are aware of each others needs and try to allow small outlets for each other when time and circumstances permit.  This synergy works best at night...we have to tag team the sleepless nights so someone can be available to start the next day.

This probably sounds sad, however, I need to include the details, even the not so fun details's important.  And yes, truly it is hard but we are aware of our challenges and somehow they find their way into perspective when our focus is the "big picture"...this picture is easier to find when the small blessings are recognized.  It helps me to record on the allows me to label the many blessings that are amongst us.  Tyler has been able to do the same in his journal.  It helps to ponder long enough to establish an emotion that can be appreciated.

Last night I watched a Christmas video of the Nativity.  It was beautiful and peaceful.  I then imagined what it might have been like to live on the earth when the Savior did.  I immediately thought of my sick children.  I would have crossed over oceans and climbed mountains to seek after Him and place my children before Him to be healed.  I felt the most calm, peaceful and humble feeling as I imagined this.  I can only wonder how it may have been for those who experienced His presence.  I am thankful for the principles of faith and hope, as we do not live during His time of mortality...yet our blessings can be equal.


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