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.

Tuesday, February 28, 2012

Trying to Walk

Alice continues to laugh and smile all day. I don't know what happened during last week's events in the PICU, but she is truly content and happy. She is so gentle and peaceful. She constantly smiles at me and hugs me. It's almost like she knows a secret that I don't. Honestly, I have said this already but I just can't hug and kiss her enough.

Most of her medications have switched to oral. So far it is working. She took a small walk in the hallway and worked so hard to walk with help.

I intended to post last night, (although I dated this post for yesterday's date) however, Alice and I ran out of time--finally by 3:00 a.m. we took another walk down the quiet hallways. She tired just enough to fall asleep...hooray!

Her ANC was 800. Still good. The doctors suspect now that it has dipped a little, she will begin the upward trend soon. Alice might be coming home as soon as Friday. Wow, we are so excited.

Amberly visited last night, brought dinner, and we chatted until past 11:00 p.m. It was a lot of fun. Alice got a new toy from Amberly, and woke bright and early to play with it. Maybe we can order a good nap today. :) Amber you are the best, thanks for the visit. It's always a good time when you are around.


Alice was having a tea party over Skype


A constant smile


More Laughs...she has everyone smiling around here.


Good walking Alice
Posted by at 11:00 PM

7 comments:

  1. AnonymousFebruary 29, 2012 at 1:50 PM

    Way to go, Alice! Even at such a young age as she is, she knows she is going home so soon. Her precious spirit has guided her along with such strength. I just can't get over it! What a blessing. I am so happy for your family; tears of joy!

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  2. KristalymFebruary 29, 2012 at 2:20 PM

    What a ray of sunshine! So happy to see her smile and laughing! I am truely amased by her will and strength. My heart is singing for you all today! Thank you Alice and Natalie for setting such a great example! My life has been forever changed by your story. Every day of this life is a gift. Thank you for sharing your gift of strength and determination and will. You and your sweet family will always and forever be in my prayers. I wish i could give you a big hug!

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  3. 6kidsrockFebruary 29, 2012 at 3:01 PM

    Happy that your little girl is getting better!!! We are praying for your family!!!!

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  4. AnnaFebruary 29, 2012 at 3:06 PM

    She must know how much better she's getting. I'm glad that you get lots of hugs and kisses. I have to bribe my kids to get some lovin'. We'll be praying for Friday! How exciting that your hospital stay is almost over! Good luck with the rest of your week!

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  5. BeckyFebruary 29, 2012 at 5:41 PM

    Love the tea party picture! I'm so happy to hear that she is doing so well!!

    You know, usually when I pray for your family I am asking for the Lord to bless you with comfort, peace, and strength to endure this huge trial. After viewing your video from the event, I found my prayer had turned to gratitude that even though you need the strength, you are both such great people and your testimonies so strong. I'm also so grateful that you've had so much help from your family, friends, and community. Anything that can make this situation easier on you, I am grateful for.

    Love you,
    Becky

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  6. jfishmagFebruary 29, 2012 at 9:32 PM

    Alice! Great job walking! I love to hear that laugh!

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  7. JanMarch 1, 2012 at 9:06 AM

    So glad to hear the good news for Evie,Natalie, and Alice. It sure brings joy to my heart to see Alice smiling and laughing! We will continue to pray for your family and wonderful recovery for the girls.

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