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.

Saturday, February 18, 2012

Improvement--Day 32 --Not Yet Engrafted--

When the doctors rounded today they were glad to tell me that Alice's white count went from 900 to 1300. Her ANC (absolute neutrophil count) came up slightly, but still considered 100. Because her white count came up significantly maybe tomorrow we will see more nuetrophils.

She has felt overall better today. :) Today we have seen a significant change in the amount of times she vomits. I am so happy for her.

Yet, another long night,I was happy to be by her side. She wouldn't let me leave her bed...nor close my eyes. There was a little shut eye throughout the night. However, by 7:30 am she decided to be tired so I caught a nice little nap. At one point last night I asked the nurse to distract her enough so I could slip into my bed and get some sleep. The sweet nurse must have chatted with her for 45 minutes. I love the nurses here, they are the best.

Sometimes I fall asleep rocking her and there is nothing I can do about it. It reminds me of the feeling when you are trying so hard to stay awake but you just can't no matter how much you fight it, and when you fall asleep you think only a split second has passed but upon waking you realize how much time has gone by--usually it's me waking to a soggy diaper on my lap.

Several months ago when Natalie and Alice were in the hospital together, Tyler and I woke one morning to a hospital room covered in Alice's favorite color of marker PURPLE! She colored the entire room, even our socks and we had no idea. It had been a long night in the ICU with Natalie, and we were exhausted, apparently Alice was feeling well enough to doodle the marker dry. Fortunately many alcohol swabs later the room looked back to normal.

On one of the movies she likes to watch, there is a Care Bear preview and she loves to dance to the fun music. It's hard to hear the cute music on the video but it's a happy tune. The words are "I wish all my troubles away." Amen Alice!!



I actually talked Alice into wearing clothes, she was cold after a bath so I made a big deal about warming up in a nice pair of pants...a few moments after putting them on she wasn't so happy about her decision to wear them. I had to snag a picture of her face. A look of disappointment.



Lisy
Posted by at 12:03 PM

4 comments:

  1. LexieFebruary 19, 2012 at 11:19 AM

    What a sweet baby angel!! My heart aches that she and you all have to endure this illness. My prayers are with you all.
    Meredith in Canada

    ReplyDelete
  2. KristalymFebruary 19, 2012 at 2:40 PM

    Keep dancing sweet Alice! Glad to see you smiling. Prayers, prayers and more prayers for you and your sweet family!

    ReplyDelete
  3. RaKellFebruary 19, 2012 at 9:53 PM

    Sweet Alice your smile melts my heart. Lots of prayers sent your way and to Natalie. I am glad she is home and doing well. Thanks for sharing your story, I read your blog in awe of what amazing examples of faith and strength you all have. Thank you for sharing.

    ReplyDelete
  4. AnnaFebruary 20, 2012 at 8:20 AM

    I can't imagine the exhaustion you all must feel. I hope so much that you're almost done. Best of luck!

    ReplyDelete

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