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.

Tuesday, September 18, 2012

Happy News! Natalie Gets to Come Home!

This morning when the doctors came in they brought surprising/good news.  Natalie can go home today and will not need a PICC line.  This is exactly what we have been wishing for, yet thought it was a shot in the dark.

The specific bacteria that she has is Strep Pneumo.  More officially called Streptococcus Pneumoniae.  I included some info from the Internet about it so Natalie can learn more about this....this is the very family of bacteria that she has always been most susceptible to, as her body never did make the pneumococcal antibody.  No wonder she had constant otitis media (ear infection) as an infant and toddler.  We have known this for many years.  The new question is when does Blair's marrow become effective in producing this antibody.

Luckily, this type of bacteria is very sensitive to your basic antibiotic.  She will be able to take an oral amoxicillin for 14 days, rather than requiring IV antibiotics.  She loves to eat yogurt, and hopefully by doing so it will keep a balance in her body's gut.

Streptococcus pneumoniae, or pneumococcus, is a Gram-positivealpha-hemolytic, aerotolerant anaerobic member of the genusStreptococcus.[1] A significant human pathogenic bacteriumS. pneumoniae was recognized as a major cause of pneumonia in the late 19th century, and is the subject of many humoral immunity studies.
Despite the name, the organism causes many types of pneumococcal infections other than pneumonia. These invasive pneumococcal diseases include acute sinusitisotitis mediameningitisbacteremiasepsisosteomyelitisseptic arthritisendocarditisperitonitispericarditiscellulitis, and brain abscess.[2]

Also both Natalie and Alice will need to avoid being outside as much as possible the next few days as the air quality is poor due to many fires.  Pollution is very difficult for their asthma and can make them more susceptible for lung infections.  

We need a good strong rain storm.  I started singing the primary song to Natalie called "When I am Baptized". because it talks about the earth being made clean after rain.  She understood the message.


p.s. Natalie really wants to know who Danika the Cat is.  She received many letters in the mail from Danika the Cat.  She loved it and is anxious to know who sent them.  Anyone know?  In fact, once she asked me how a cat could use a pen and write.  

The absolutely hardest part about going home...removing the IV--OUCH! 

Her favorite place to hang out....yesterday when we were looking out the window in the afternoon we could hardly see the city buildings because the air was so dirty.  I read that the fires in Idaho are blowing smoke our way and the fires in central Utah are as well....thus we REALLY need rain!

1 comment:

  1. Yea! I'm so excited that Natalie is doing better and that Alice is doing so well! I loved the pics! As always you guys are in my prayers! Let me know if I can help out at all