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, April 22, 2012

Saturn's Rings and Evie's Ears

Last night we looked through a telescope and saw Saturn. It was really something to see the rings so clearly. It was relaxing and fun to see the kids get excited about looking into space.
Tonight was dressing changes for both girls. For Natalie it was not as painful this time since we had used a different type of adhesive to secure her line. She even did it herself without a whimper. Alice throughout the afternoon had anticipated her dressing change. She every other five minutes would say, "Dad don't change my dressing!" Anyhow, she did well enough. Always tough to see them go through it each week.

Poor little Evie hasn't been well.  She woke two days ago with her first fever ever (a crazy new thing for us to have a 9 month old baby that has never been sick previously--not complaining)  Lisy took her to see the pediatrician because we suspected that her ears were hurting, once we ruled out that it must be more than just teething.  Sure enough a double ear infection.  She was given some antibiotics and hopefully by tomorrow she will have some relief.  Maybe tonight will be more restful than the last. 

Blair again made me laugh yesterday. Now, the information I'm about to divulge is embarrassing to me but too funny to pass up. I remember back in the day Saturday Night Live would do a spiff called "Deep Thoughts by Jack Handy." They became so popular that a book was made of them.....anyway, Blair seems to have similar deep thoughts, and they seem to be just as funny sometimes.  I was able to escape for 30 min to get out, run and breathe a bit before it was time to administer the girl’s meds. I was a fool and ate a hamburger before I left. So, with a mile left to go, the hamburger decided its new home wasn't too pleasant; then told my body it was making an emergency move, and its exodus would be nothing less than spectacular. I made it to the house, rushed in and made it to the bathroom, closed the door and realized I had passed Blair on the way. Just then Blair pressed his mouth against the crack of the door and gave his "Deep Thought:"

 "Dad, when I have to go number two, I just make an angry face until it turns red and then everything goes good. You'll do fine Dad."

 I returned a weak reply and said, "Thanks Blair, you're the man."



  1. That is a funny story. I have to admit, I wouldn't be brave enough to post it. You're the man, Tyler.

  2. classic! i grew up with those same "deep thoughts" and blair could totally steal the show with that one!