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, March 29, 2012

Super Heros

I tried something new today with Alice, an attempt to learn from my mistakes of yesterday. Yesterday wasn't our best day, I tried three different times to give Alice a nap. She was very tired, however, wasn't excited about taking a nap. I offered to lay by Alice until she fell asleep. Tyler looked at me like...yeah right! He must have known that disaster was calling. Each time I tired to lay next to her I feel asleep and she ran away. Once, I woke to her giving me a stuffed animal to sleep with; she then came with a diaper, wipes, and A&D ointment to change my diaper. I thought to myself, well that didn't go over very well. I decided to quit trying, peel myself out of my p.j.'s (thinking I had a good excuse to stay in them as I was going to lay with her anyway) and just take her for a drive in the car. That always works. So today, the new thing was, I took her for a car ride first and our day was much nicer. She wasn't as cranky and everyone was happier.

When I came home from our drive, Tyler had the others fast at work with their school assignments. While Natalie and Matthew are doing their Math and Spelling, Blair sneaks onto their RazKids website and buys things with all the points they have earned reading the books. Natalie keeps after him, because the items he purchases are downgrades from what she already had. I have a hard time being serious about it because for some reason I see a glimmer of humor in it, I guess the saying of one person's trash is another person's treasure seems to apply, especially to the children.

Natalie told Blair today that he needs to do things for himself and not keep asking her to get him things--he said, "I don't have the right brain for's the wrong one." I happened to only over hear his answer, I quickly stepped in to see what the fuss was about. I was surprised to learn of their conversation. I tried to help Blair understand that his brain is very good and we just need to teach it some tricks about being more independent. I tend to think his brain is the right one, and that he just needs to have a little more fire under his feet. It takes some great amounts of creativity to motivate Blair with things that seem boring to him.

Once Tyler needed Blair to carry a box down the stairs, so he asked him to help. No response from Blair, it seemed as though it went in one ear and out the other. Tyler proceeded to explain to Blair that the box was full of explosives and if he didn't get the box downstairs to safety in 30 seconds it would explode and create a great deal of disaster. He jumped right up to fulfill the assignment.

Parenting one child can be a challenge, however, no two children are alike--to find what works for each is an art only to be mastered over time.

As parents we are learning new things each day. By the time our children are grown we might have some great tricks under our belts.

The past couple weeks Alice has been asking to watch Superman, not sure why...she talks about it all the time. We watched it a week ago to satisfy Alice's desire and then a few days later the children received some darling capes in the mail. Wow, great timing. Tyler played the Superman soundtrack as they strapped on their capes and they loved it. I'm so glad I got some pictures. The children have been flying all over the house since.
Alice thinks if she blows air with her mouth she is actually flying. I had to catch a video of her with the cape. It is cute when she runs--in her mind she is going very fast I'm sure.

I forgot to mention on Monday's post that Natalie's fluids at night no longer have Magnesium. Alice has done well the past couple of days without taking Zofran. She has kept all her medications down without the assistance of Zofran. This is a big step for her.


Super Evie!!


  1. Total stranger here ( weird right) but I was at your fundraiser and have been following your blog ever since. I LOVE watching your girls get healthier every day it seems. Can't imagine the joy you must feel seeing it.
    P.s. when you finish Downtown Abby, Little Dorrit on PBS!!!!!

  2. Superhero kids! What a fun day!
    Was led here by the fundraising cookbook. Your daughters turned out to be the statistics huh? Good to read that you seem to be doing well. Hope the happy times go on. :)

    LPN Programs

  3. Thanks for posting this Lisy, I've been struggling with getting Linnea to be motivated to help herself instead of assuming Tiffany is going to do everything for her all the time. This gives me good ideas, and it is good to know ours is not the only family dealing with that. :) Love you guys!
    -Amy P.
    Ps your kids look great in their capes!