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.

Wednesday, July 4, 2012

Happy fourth of July---Update on Alice

Care Bears are coming out of my ears....non-stop all day! Alice loves the Care Bears. Every once I a while I will sneak and turn on the news to see what the latest is on the Alpine fire, she will say to me, "oh no Mom, not this". Finally I coaxed her into watching the broadcast on PBS of the celebrations in Washington D.C. She was fine and watched it with me, the fireworks were great, and this is how we celebrated the forth of July.

Today the doctors came in with good news...she may be able to go home tomorrow :)
Things really began to improve with Alice yesterday, she began requiring less oxygen. Her breathing became less labored. She looks much better. The contributing factor is the steroid she inhales twice a day. It's amazing the turn around she has made. Although she is getting better she will still require oxygen at home.

Interestingly, when I was talking with the doctor this morning we came to another conclusion, possibly her difficulties are not from rhinovirus, yet hand foot and mouth disease (again a virus). She had this once before--almost a year before transplant. The hard earned immunities she acquired before transplant carry little weight today.

I have been under the weather as well with a terrible sore throat, itchy spots on my face just like Alice....I think I know where I got it ;)

Tomorrow is a new day--a good one it will be, each day is one step closer to better health.


 Nobody likes to brush their teeth unless it's fun...we decided to have a little fun brushing our teeth.

                              Getting settled in for another Care Bear never gets old.

                                        Pretending to be a princess always helps the time pass.

1 comment:

  1. You and your daughters inspire me every day. Your strength is simply stunning. Thank you for having this blog.