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, March 21, 2012

Situps and Cook Books

I made the mistake yesterday thinking that I could do a stomach workout. This morning I woke up needing help out of bed. All day,I walked around as if I was in need of a cane . Each time I picked up the baby, a small yelp escaped. It would in turn startle Evie, and then she would start to cry. We both cried. We cried so much it was like we were trying to out cry each other. I won. It was a rough day. Oh how youth seems to be so long ago now; when we could play all day and wake up the next morning and play all day again without the pain of a recovering body.





Alice was cute....I hooked her up to her IV line tonight with with her medicine ball. She through it over the side of the bed and said, "Look Dad, I'm fishing." I quickly grabbed a hold of the line and gave it a little tug, her eyes lit up and she pulled it in.

Natalie is anxiously waiting to be able to go out and eat fast food. She has been so patient, however tonight she got a whiff of Little Cesar's pizza coming from the neighbors and begged to have some. She only has a couple more weeks until she will be able to do so. We are so excited for her to get back to normal, and fast food in her mind is the first step towards it.

We have had several inquiries regarding the E-book & hard copy cookbook and where to get it.
This is the address:

http://www.lemonpoppycake.com/​2012/03/​blogging-for-fishes-buy-now.htm​l

We are so grateful to lemmonpoppycake.com for organizing this. Thank you.

In addition thank you to Tami Goeckeritz for organizing the online auction that many of you participated in. We are so grateful for your love and friendship.

Tyler
Posted by at 9:28 PM

7 comments:

  1. Allyson MorrisMarch 23, 2012 at 1:31 AM

    Natalie is no fool....fast food is delish and I hope you take her straight to mckyd's in cedar hills for a happy meal and better throw in a 3/$1 chocolate cookie deal while your at it. I'm so glad things are going so well with the girls. It was awesome to see you two last week also.

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  2. Jessica @ Barefoot by the SeaMarch 23, 2012 at 10:22 AM

    Newest follower and spreading your story via my blog as well. Your story is so inspiring, your children are beautiful, brave and strong. Thoughts and prayers going out to you and your wonderful family.

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  3. Jenni RussellMarch 23, 2012 at 10:45 AM

    I saw your video through a friends post on Facebook, Such an inspiring story!! I have done many rounds in the hospital with my now almost 3 year old, with rounds of RSV, pneumonia, etc. As an asthmatic things get bad every time she catches a common cold. I have been so frustrated with sicknesses and the frustrations that come awaiting tests, diagnosis, more tests, etc. I feel I reach my breaking point, but this story gives me courage, gives me strength for my daughter. I thank the Fishes and their two strong, brave girls, and their strong little guy who was his sisters hero. As for the parents you are the real heroes, staying by the bedside endless nights in a row, trying to contain yourself when your child hurts- because it hurts in you so deep. The financial stress, dealing with insurance, and putting on a brave face to pray and tell them everything will be okay, even when inside you are unsure how much more you or them can take. I pray the Lord will watch over your sweet family and that there is light at the end of this very long tunnel. Your strength is amazing. A dear friend once told me through our own family struggles, "the longer and harder your trials, the more great and rewarding your blessings are in the end." Stay strong and positive girls, there are people praying for you all over the world!!

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  4. AnnaMarch 23, 2012 at 12:20 PM

    I'm so excited that Natalie is so close to being able to eat things from outside the house. And I'm with you on the good old days, when we had energy. Some days I can't even watch the kids run around the house. It makes me too tired. You guys are awesome. Keep on keeping on!

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  5. Mountain MamaMarch 27, 2012 at 9:39 PM

    Sending you prayers!

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  6. cupsbykimMarch 29, 2012 at 8:11 PM

    Tyler,
    I found out about your family through lemmonpoppycake.com and purchased two of the cookbooks. What an amazing story your family has. The strength and courage your little ones have just blows my mind. I have two children myself, and just seeing the pictures and the videos of your little ones just breaks my heart. I want you to know that you and your family are in my prayers. May God bless you and your family with strength, healing, courage, and love.

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  7. UnknownApril 3, 2012 at 1:06 AM

    You have strong children and i hope they will be blessed by the god to get their best sensible position.


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    ReplyDelete

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