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, January 4, 2012

Hello Everyone--Day 14


The doctors stepped in this morning for rounds and gave news that was a little concerning. Natalie's Cytomegalovirus (CMV) had increased over the night. Approximately 80% of the population has this virus in their bodies, however because of Natalie's compromised immune system, she will need a more aggressive regimen of anti-fungal medicine. They will be watching her more closely throughout the day. Another platelet transfusion will be needed today as she spit blood throughout the night.

This morning the morphine assisted in opening a small window of opportunity for me to get Natalie to speak a little. It took the strength she had left in her, but wanted to say hello to everyone.
Tyler


Posted by at 11:54 AM

5 comments:

  1. AnnaJanuary 4, 2012 at 1:23 PM

    Poor babe. She looks so beautiful but so miserable. We're sending all our prayers your way.

    ReplyDelete
  2. AmieJanuary 4, 2012 at 8:38 PM

    Natalie- your hat is adorable on you! I love the flower in the front. You are the toughest girls I know. I thought I had it rough when I got canker sores from my braces but you made me realize I was just a big wimp in an adult body. I hope you get feeling better soon. Abbey asks about you all of the time. She can't wait till she can play with you again at recess.

    Keep being strong and know that we are praying for you!

    Lots of love--

    Amie Christensen (Braxton & Abbey's mom)

    ReplyDelete
  3. ChandlersJanuary 4, 2012 at 10:20 PM

    Natalie I love you. I hope you get feeling better soon! Love, Riley
    Natalie I just wanted you to know how much I love you. Keep being strong. Love, Benny
    Hi Natalie I love you and miss you. I pray for you every time I pray. Love, Livvy
    Natalie you are so nice. I know you will get better soon. I am praying for you. I love you. Love, Emma
    Natalie you are so wonderful We love you Love, the Chandlers

    ReplyDelete
  4. StrongsJanuary 5, 2012 at 7:29 AM

    Darn that CMV! I am so sorry Natalie. As you tried to wave and smile for us in the video, we could all see once again the true fighter that you are. Here is a silly little poem about a snapping turtle that made me laugh. I guess they are fighters too. Love you- Sis Strong

    The Little Turtle
    BY VACHEL LINDSAY

    There was a little turtle.
    He lived in a box.
    He swam in a puddle.
    He climbed on the rocks.

    He snapped at a mosquito.
    He snapped at a flea.
    He snapped at a minnow.
    And he snapped at me.

    He caught the mosquito.
    He caught the flea.
    He caught the minnow.
    But he didn't catch me.

    ReplyDelete
  5. Kat and JonJanuary 5, 2012 at 10:51 PM

    Lisy, I just found this blog about a week ago and have been following it faithfully ever since. I've thought a lot about your family over the past few months, and more especially since starting to follow your blog. I can see that Natalie is a strong little girl and her will/determination is an inspiration to all of us! Lots of love, Kat

    ReplyDelete

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