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.

Thursday, July 5, 2012

Alice Came Home Today

Yipee!!  Alice came home.  She needed to go throughout the day on room air before they would let her go home.  She will require oxygen for possibly two more weeks while she is sleeping.  Thankfully this is something we can do at home.  On our way home from the hospital Matthew called to see how close we were and Alice heard his voice through the phone, she yelled from her car seat, "Matthew, I'm coming home!!"  She was so excited to see everyone.

Each night in the hospital I would try and sing a lullaby to her.  She only wanted me to sing the Happy Birthday song.  I think she requested that song, because it's got to be the only song I can sing while the tune still recognizable.

We had some fun times this past week in the hospital; played a lot of games, read a lot of books, and watched A LOT of Care Bears.  I have some cute pictures and videos of her that I will post.

I keep saying "I will post pictures, etc."...reality is now that I found my USB cable, I can't find my camera.    Isn't that the way it is sometimes.

Natalie told me when I came home with Alice that she missed me and asked that I never leave again.  I would love to commit to that promise :)

I took Natalie to the store and she and I picked out some more gluten-free food.  I have to admit that I had a little break down while shopping.  I had to work hard to hold back the tears.  Seeing Natalie looking intently for gluten-free foods and wanting so badly to see the same varieties she would under normal circumstances was hard for me to swallow.  I know once I have enough uninterrupted time at home I will be able to create meals just as satisfying.  With that said, I see that under her new diet she is becoming more healthy.  She eats more fruits and vegetables.  She loves chicken legs...we know how to make good chicken legs.  I have her taking a really good gluten-free vitamin to fill in any gaps of nutrition.  Over the past couple weeks Natalie has become more confident in herself.  Tyler and I feel like she has learned a great amount of self control (due to her new diet) which in turn has strengthened her confidence...such an amazing fact of life.

Lisy



                                                       Cinderella is going home today!

 The moment Alice walks in the door she yells, "Hey guys, I'm home!!"  Waiting for the grand welcome!

                                                             So Good to be home!


Posted by at 10:43 PM

5 comments:

  1. KelleyJuly 7, 2012 at 12:45 AM

    So happy that Alice is home. I loved what you shared about Natalie learning a big life lesson. She is stronger than steel. You all are. We love & miss you & can't wait for another sweet reunion! Catch the one million hugs we're sending your family! Love you all dearly.

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  2. JODIJuly 7, 2012 at 8:06 AM

    Lynn's Kitchen Adventures blog has a pretty extensive gluten free section, hope there are some good finds on there for you!!!

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  3. AnonymousJuly 7, 2012 at 11:48 AM

    It's interesting reading about Natalie and her gluten free journey because I have had very similar experiences! I have also found that now that I'm on a gluten free diet, I have tended to eat a bit more healthy than I did before. It is also amazing how I've found that self control that I never knew I had as well! Going gluten free really is a great thing, not only for someone's health, but for their confidence/willpower/self control/etc! I hope it continues to go well for you all! The main reason for writing was that I wanted to share a gluten free food that I just found and LOVE! Snyder's of Hanover makes pretzels and they recently came out with gluten free pretzels! They taste so very good! One of my family members accidently had some of my pretzels and said that they tasted just like normal pretzels! I've been so happy ever since I found those! :D

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  4. Jill HeapsJuly 7, 2012 at 6:09 PM

    Yahoo! I am soo glad Alice is home! I am sooo glad Natalie is doing well. I am so proud of her! AND YOU!! Welcome home!!

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  5. MindyJuly 8, 2012 at 3:54 AM

    so glad Alice is home. Chex has 4 different cereals that are gluten free...... for a fun change when she/ you want to spice it up!! we sure love you guys.

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