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, January 2, 2012

Day 12

Natalie had a better day today than normal. We have been staying on top of her morphine. She received more platelets. She played checkers (beat her dad three times), watched a new movie called Ramona and Beezus, which seems to be a bit more age appropriate than Harry Potter and the Deathly Hallows that she had seen earlier in the day. ;)

I came up in the afternoon so Tyler could go home for a night. When Natalie woke from her nap she sat up ever so quickly and gave me a giant hug. That made my day! I was equally as glad to see her. I feel much less anxiety and worry when I am with her, than when I am home. However, it doesn't matter where I am...I always feel I should be somewhere else. I think about the kids at home when I'm with Natalie and when I'm home I think constantly of Natalie. What a dilemma!

Natalie and I really had a fun evening. We read some fun books. Planned out our week of countdown to engraftment. We plan to have something to look forward to each day so the time will pass a bit faster. This evening we played a joke on one of the nurses. She wanted me to place a whoopee cushion on the chair where the nurse will sit and video the nurses reaction. Anything for a smile...right? Hmm..that might be a fun video post sometime. I'll admit I struggle with technology. I never have the cables, cards, chargers, and such that I need to make anything of it...thus the shortage of pictures or no pictures when I post.

Natalie told me that I am not a very good checkers player and that she would teach me how to play. I think that is a fabulous idea Natalie. The truth is--I really am trying.

Alice has developed a cold and cough over the past two days. Tyler will bring her in tomorrow to be examined. Hopefully nothing will come of it.

The nurse switched the chair in our room for a bigger and softer chair. I'm looking forward to a good nights rest.

Thanks to all,

Lisy
Posted by at 11:35 PM

6 comments:

  1. StrongsJanuary 3, 2012 at 8:45 AM

    Lisy-
    I am so happy to hear of Natalie’s “better” day. I have thought so often of the anxiety you must feel from being either at the hospital with Natalie or home with your other children. As a Mom, It is so hard for me to imagine how you are dealing with it all. When this is all over and your family is not only well, but all together under one roof- I am certain that you and Tyler will experience a joy and peace that far exceeds anything the rest of us have can even imagine. I am so looking forward to the blog entry titled “Home together at last”. We will keep praying for Heavenly strength for you and your family. You are an amazing Mother and your children are so blessed to have you.
    Your Friend- Rebecca

    ReplyDelete
  2. Katie In NJJanuary 3, 2012 at 11:30 AM

    I'm 59 and Ramona and Beezus is the book I remember the most, as I loved it the most, from my childhood! So surprised to hear it's still around, in movie form! Yay!

    I'm also so glad Natalie had a better day! Each good day is a real gift, isn't it?

    Hope Alice gets well fast!

    And it's neat that you got a better chair in Natalie's room. Good things come in chair-sized packages sometimes. :)

    Behind you all the way as you keep up the good fight...

    xox
    A blog fan and stranger,
    Katie

    ReplyDelete
  3. kristy GayJanuary 3, 2012 at 4:27 PM

    Natalie...WE LOVE YOU. I have never heard of a more brave girl in my entire life! I tell my friends about you and they think you are beautiful and brave too. And along with being so awesome you are even the champion checkers player - wahoo! You have got so many people in this world cheering for you!

    With love,
    Kristy And Buck Gay

    ReplyDelete
  4. KathyJanuary 3, 2012 at 9:13 PM

    Lisy,
    So glad to hear that Natalie had a good day. Sounds like today was a great day all around- a giant hug, Ramona and Beezus (cute movie), new chair, books and checkers. I'm a little jealous :) I can totally understand missing being with all your kids. I, too, can't wait for your family to be all together again and healthy. It will come soon enough and you will look back on this with fond memories (right?) :)
    I want to apologize for not commenting sooner. I read your blog faithfully, but am usually in tears and can't seem to make my thoughts come out in a helpful way. All my love, faith, and prayers are being sent your way.
    Love, Kathy

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  5. JessiebugJanuary 3, 2012 at 9:43 PM

    Natalie, Hi sweetie, this is Sister Jessica Benson. I just got put in as the new Primary President. Sister Martha Eagar is the new first counselor, Sister Janis Hardy stayed as our second counselor and Sister Tara Shumway is our secretary. We wish we could come see you. The Primary thinks about you and Alice all the time. We are so proud of you and are amazed at how brave you are. We love you and pray for you!

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  6. AnnaJanuary 4, 2012 at 1:31 PM

    Natalie, I am terrible at checkers. I hope you can teach me how to play, too. Caroline beat me the first time she played. And I was trying hard! You girls are just too smart for your poor mothers.

    ReplyDelete

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