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.

Monday, August 27, 2012

Welcome Home Again Alice

Tyler and I both agreed that this past hospital stay with Alice felt like two days is all, however, she was actually there five days.  Somehow the time passed without knowing.  That might have been a good thing.  As far as her condition, she is stable and well.  Nothing really changed.  She still has diarrhea.  It should clear up soon, if not, we will reevaluate her medications.  Her current situation is definitely better than several weeks ago when she experienced true graft vs. host disease.  We are thankful that nothing major came from this past hospital stay.   Welcome Home Alice!!  It's always better when you are home with the family.  She gives us all direction and keeps us on our toes.

When I tucked Alice into bed tonight she checked to make sure the stepping stool was beside the bed so she could get out of bed by herself in the morning.  She likes to sneak into our room bright and early and scare us.  She does so by pounding on our mattress, which makes her giggle so loud that we all wake up, including Evie.  I will say that I'd rather wake to her giggling than the alarm Tyler downloaded for my phone....Dukes of Hazard Horn.  Not sure which I prefer; my other alarm to remind us to administer the girl's medications is a rooster crowing.

Natalie came into clinic today.   She did well.  I was worried that she might have pneumonia again because her lungs sounded bad as well as her cough.  Her chest x-ray looked great.  The pulmonary function testing was great.  Most likely she is having some asthma flare ups.  We considered this as well, however, wanted to make sure it wasn't something more serious.  The bone marrow team is setting Natalie up with a pulmonologist to help sort out the issues she is having at night with her oxygen.  Possibly she just needs her adenoids removed...who knows.

Natalie saw a little pink stuffed elephant in the gift shop as we walked by.  She asked to touch it, so I let her.  Once I saw that it was only $5.50 I told her that I would buy it for her if she was really brave when they did her labs.  She did awesome, I was so proud of her.  I guess elephants are the key.  She is crazy about elephants.  This little elephant has now joined Jerome under her arm as she sleeps.

Tyler had a great time with the other children while I was away with Alice.  He introduced the kids to the show MacGyver.  The kids thought it was awesome...although, Tyler was disappointed to see that The Italian Job copied MacGyver's idea with the mini coopers in one of the episodes.  I thought it was impressive that he even cared.  I remember watching MacGyver with my Dad when I was a kid...great memories.  My favorite episode was when MacGyver was snow skiing and was caught in an avalanche.  He managed to  blow a marker flag out his ski pole so others could locate him.  I always felt safe skiing in deep powder because I knew I learned some very valuable things from MacGyver. ;)

Enough rambling on...all is well at our house.  Thank you everyone for your kindness.


Pulmonary Function Testing...if you look close you can see that some of Natalie's hair is sticking up in the back.  It's so cute.  She keeps asking me if I will cut it so it won't stick up.  I'm trying to help her understand that it will have to grow out sometime. 

Natalie did awesome.

Checking out the gift shop.

1 comment:

  1. So glad Alice is home now and everyone is together again. I love Natalie's hair! She is looking so cute! I also wanted to thank Lisy for the Big Bad Wolf post. It was posted at a time I really needed it. Thank you for sharing!!