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, June 4, 2012

Alice Is Back

It was a nice evening at home, but it didn't last long.  When Alice woke this morning she felt warm to me and was fussy.  She had a temperature of 101.7 degrees.  I prepared our things to return to the hospital.  Then packed Matthew, Blair and Evie's bags again. 

I took the kids to the Cutler's.  Matthew and Blair were so excited, it's like a vacation for them.  Evie seems to adjust quite well.

As I pulled into the parking stall at the hospital, I was a little close to the line so I backed up to straighten out the car and Alice thought I was leaving, she started to cry because she wanted to stay.  I love that she loves to be at the hospital.  It sure makes our life that much easier. 

Alice came back to the very room she left last night.  Again, Natalie and Alice are neighbors.  Alice told her nurse today that her (the nurse) eyes were pretty and they matched her dinner tray.

Alice's fever broke upon arriving and has had only one low grade fever since.  She seems to be doing well.

Natalie went almost 24 hours without a fever.  Some improvement!  She spiked again this evening.  It's possible she will have a PICC placed tomorrow, which at this point will save her a lot of stress, considering she requires daily labs.

Tyler went running today for a moment to get out.  He chose a route with slopes and went at 4:00 in the afternoon.  He said it wasn't his best run...I can see why, I heard it was a record high day. 

Yes, this is a hard time for us but still there are things happening each day to make this journey sweeter.  It's a matter of recognizing the tender mercies among the challenges.

More news tomorrow. 

Lisy

1 comment:

  1. Oh my goodness! What craziness!! I hope the docs can figure all this out soon...poor Natalies tummy and all the IV's! Emily freaks out with IV's it really is so much easier with a central line. She is such a trooper! I hope Alice can come home soon too...you can tell she doesn't mind the hospital which is a great thing :) Emily used to call it "my hospital" Your kids are so darling! I am sure Matthew had a fabulous b-day! Friends and family are the BEST! Prayers are coming your way :)

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