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, August 8, 2012

Happy Birthday Alice!

Day 231-Natalie, Day 204-Alice

Alice turned three today, and was home to celebrate.  The first birthday of her life to be celebrated at home.  Her first birthday was spent in the American Fork ER.  Her second in ICS at Primary Children's.  It was wonderful to be home for this one.

She has been doing very well over the past week.  She is still very swollen due to the steroid.  She gained a fourth of her body weight in two days shortly after they placed her on the steroid.  Often we rub her feet and elevate them to help the swelling go down.  When she stands too long she complains that her feet hurt..they must be quite tender.

As for Natalie she is doing great.  She started eating dairy, but we think it's too soon, so we are cutting it out once again.  She continues to require oxygen at night while sleeping.  We are not sure when this phase will pass.  I don't know that she will ever get used to wearing the nasal cannula.  She complains about putting it on.  She sneaks it off during the night.  Some nights it's tempting to just turn off the monitor and let her be.  I know she dislikes being bothered while trying to sleep, as Tyler and I equally dislike getting out of bed each time to fix the problem.  Hopefully soon whatever is causing her level to drop will clear up so she can sleep without the tube in her nose.

Since the hospital golf tournament at the Homestead two weeks ago Tyler has been wearing his prescription sunglasses non-stop...including indoors and evening.  While at the tournament he handed me his regular glasses as he switched them, and somehow I vaguely remember him handing them to me let alone what I did with them.  We have searched and searched since.  They must be gone.  I keep teasing him about wearing sunglasses at night...I just think it's so funny.  Not so funny that I am the reason of his obnoxious situation.  I decided one day I would wear my sunglasses all day and night too.  It didn't last very long before I couldn't stand it.  Tyler is a good man, he hasn't complained a word.
 He found his written prescription and sent off for new ones...phew, hopefully they come soon.  I believe that when you are living in sheer survival mode you tend to follow the philosophy of 'out of sight, out of mind'.  I'm afraid I put his glasses out of sight.

The boys are getting excited for school to start soon.  I have mixed feelings.  I am happy for them to start and be around more people.  However, it has been awesome for our family to have no agenda except whatever we make of it each day.  Natalie is wishful that January will come she may join them.


She wanted a Care Bear cake...Aunt Jessica made the best Care Bear cake ever! 

She was so happy when she saw the cake.

We played pin the belly badge on the bear.

Pretty good Alice.

Evie could be a Care Bear herself.

Cinderella panties!

A perfect dress for twirling.

She can hardly stand the excitement.

Care Bear blanket and pillow case, and Ken and Barbie.  Alice loves Toy Story 3.

She put on a dancing show for everyone in her dress.

This says it all.  

She loved every minute of her party except when something didn't go her way.  Is there a name for the birthday melt down thing.  She was trying to pout in this picture.

Thank you everyone for helping make Alice's birthday so wonderful.  She had both grandparents there and some of her aunts and uncles too. 


  1. Such a cute bday girl! Thanks to your blog we don't feel like we are so far away. Love to you all.

  2. Lisy.. So happy to see that Alice had a good 3rd Birthday! So glad you weren't up at PCMC. Love that she still has her watered down apple juice in her ba ba by her side. Hope that you can wean steroids soon. Give her a big kiss and a hug from me.

    See you soon..


  3. Happy Birthday sweet Alice! I am so glad she had such a wonderful birthday, she sure deserves it! What a lucky girl to have such a beautiful cake...great job Aunt Jessica!!! I want a Care Bear cake too!!!!