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, October 21, 2013

Elmo's Guitar Day+4,


This day might just be the last of her playful self...for a while. Her desire to play is diminishing quickly as the pain takes over.  Surely a child is in pain when they choose not to play because of discomfort.

Her windows of activity are narrowing, and her ability to communicate and talk are decreasing.

The day went well enough, we had some great visitors.  Wes Smith also came to visit.  I suppose Alice spoke more with Wes than she had all day.  Alice played a trick on Wes; she had me place a mouse on his shoulder while he wasn't looking.  He played the part so well and she got a good laugh out of it, and then he told Alice a story when his son played with a real mouse; and I got a good laugh out of that.

Lisy


The IV tree is growing :(

Koy, Stefanie, and Alice (trying to keep it in...where's the pink bucket?)

She loves to jam with Elmo.






She asked me to video her doing her mouth care...I thought it was interesting that she asked that.  I am glad I did...she is so cute.  It takes a long time to coax her into getting her mouth washes done.  I had to pause the camera a few times while I gave her pep talks.

Posted by at 11:30 PM

5 comments:

  1. Bryan and Amanda RussOctober 23, 2013 at 8:31 PM

    Wow, Alice, thanks for sharing your rocking out skills with Elmo :)! I think you were so brave to do your mouth care on video. I'm going to show my kids how strong you are! Doing hard things, especially when it hurts but you know it is right, takes the most courage and makes Heavenly Father so proud! Thanks for being such a good example for us. We are sending lots of love and prayers all the way from Florida!!!

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  2. AnonymousOctober 23, 2013 at 9:22 PM

    Her guitar video just melts your heart! But her mouth care video breaks it :( I'm so sorry she's hurting so much. I hope everything starts going uphill from this point on. What a sweet baby girl!

    ReplyDelete
  3. Jill HeapsOctober 24, 2013 at 7:04 PM

    These videos are PRICELESS! You will be so glad you have them. Things you think you can never forget, seem to erase from our minds with time...how nice that will be right?! She is so tough!! Alice we are sooo proud of you!! Keep up the great work LOVE YOU!!!

    ReplyDelete
  4. Stef plus 3October 24, 2013 at 9:03 PM

    Alice you are doing a great job with your mouth care. Keep smiling baby girl!

    ReplyDelete
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