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.

Saturday, April 14, 2012

Blair's Birthday


Birthday Man in Bubbles


Looking Good

Blair turned 5 yesterday and could hardly wait to make his birthday cake. The boys wanted to help make the cake, especially to decorate it. The night before they rummaged through their toys to find some cool cake toppers. We just decided to let it be their work, and thus it was! I helped as Blair requested that I draw a little man on the cake with frosting. Being that I'm an expert cake decorator his man turned into an alien. He didn't mind, he said, "This man just has one eye." A one eyed man is quite cool to a five year old. We washed all the cake toppers of course before contaminating the cake. It was yummy!!



We played a fun game called pin the tie on Blair. Tyler and Blair tied for first place, so they had a retry and Blair was almost right on again...he thought he won until Tyler placed it dead on. Well, Tyler was peaking through the blind fold...no cheating Dad! Blair won a giant beef stick for taking first place.




Blair really wanted this game for his birthday because of Toy Story

Interestingly Tyler and I looked back in his journal to see what we had done for Blair's birthday last year. Not quite the same excitement as this year.

Tyler's entry reads:

"Today was long again. I took the kids to work with me while Lisy was with Natalie at the hospital. Natalie had her PICC line removed this morning. I have a big dead line at work so I had to meet Lisy on the highway to send the rest of the kids home. Blair's birthday was today, I missed it because I have to make up lost time at work, got home around 2 am. Alice is quite ill with the chicken pox, the sores are really starting to come on heavy. She looks terrible and is becoming very restless. I'm tired and worried."

I remember the day being very difficult as well. It's wise to assume that we all have challenging days...like everyone else we just move ahead and make the most of it. Simply doing the best you can in the moment, is enough sometimes.

Lisy

p.s. Natalie and Alice are still doing fine. Natalie is still as she was a few days ago, thankfully not worse...same little cough, no more fevers.
Posted by at 10:36 PM

4 comments:

  1. AnnaApril 15, 2012 at 9:08 AM

    Blair is an amazing boy. I'm glad he got a cake and a fun game for his birthday. I can't believe all that your family has been through in the past year(s). You are all incredible examples to us.

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  2. Jill HeapsApril 16, 2012 at 11:14 AM

    I love your updates! You have such a darling family. I hope Blair had a fantastic Birthday! We are praying for you as always!!!

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  3. TaraApril 16, 2012 at 4:22 PM

    We are so glad Blair had a great birthday - the smiles say it all! Also glad to hear that Natalie's fever is gone and she is starting to feel better. Love you guys!

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  4. AnonymousApril 17, 2012 at 11:30 AM

    I love that kid. I have found memories of chasing him around the church to get him back in his primary class. He was loving the chase and I love catching him. Janis Hardy

    ReplyDelete

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