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.

Sunday, October 26, 2014

Matthew's Reflections Project

Just wanted to make a quick post. This past month we have been working with the kids on their reflections projects. We are thankful for a brother in law we obtained a drone from to do the filming.  The theme this year is "the world would be a better place if..." Matthew thought the world would be a better place if we took more time to go outside and play. This is the result. It was really fun to do. Matthew directed, and also piloted some of the footage. Lisy and I piloted too.

Monday, October 20, 2014

BMT Birthday for Alice

I find it hard to make time to post.  Life continues to become more and more normal.  However, most of my time is spent holding Isaiah...nothing I'd rather do more.  I get very little done these days and I suppose that is okay.  He will grow up too fast anyway.  I haven't posted in nearly four weeks, so I will do my best to give an update.

October 17th came and left before we realized it was Alice's one year BMT birthday (second BMT).  Honestly this past year has felt like five.  We had a lot happen in a year.  Thankfully we can say that this past year is behind us.  We wouldn't do it over again! 

We will request to make contact with Alice's second donor at our next clinic visit, which is on Wednesday.
Also on Wednesday Alice will have her one year post BMT review.  She has a list of things to accomplish for this review.  It's too much for one day so we are splitting it between two days.  She will have another psychology evaluation, a hearing test, a dexa scan (at the U of U), multiple labs, a pamidronate infusion, ophthalmology exam (might not be until later in the year).
Hopefully all these test/labs will bring happy results.

Alice and Natalie continue to do well, of course with little bumps here and there, but nothing abnormal.  Each had a fever last week.  Nothing came of it, thankfully, however, Natalie has a cough that seems to persist.  It is key to stay on top of her pulmonary care.  Possibly her asthma is kicking up more.
On another note, Natalie lost her beta fish and felt it best to give it a proper burial.
Fire was a red fish...of course.

Alice's arm is slow to heal, we are wondering if her body is absorbing proper nutrition.  We have doubled up on calcium and vitamin D to help her arm heal.
Also Alice complains of tummy aches after eating.  Tyler and I have decided to take Alice off wheat/gluten to see if this might help her.  Hmmm....we'll see!
After her pink cast she decided it was time for blue.
Lets pretend they were celebrating her BMT birthday, and we remembered.  I'm afraid it's only a coincidence I was cleaning out a random box of things and they found these hats.
Hard cast is gone...time for the brace.

Alice swam for the first time since her line was removed.  Basically the first time ever going under water...including in the bath tub.  It looked so strange to see her in the water like that, something we have never seen.  She really enjoyed playing in the water.  Thank goodness for a great swim teacher!
Nicole and Alice

Matthew had a great tackle football season.  He was a great player, and enjoyed the game.  The time commitment was new to us and took some adjusting...especially for me.  I can't believe how competitive our society is with sports.  I guess that is normal and I'm just out of the loop.  Way to go Matthew for playing so well your first year of tackle.

Blair played flag football.  He enjoyed the game as well.  One particular game Blair scored a touchdown and look over to see our approval and excitement, I was busy dealing with the little ones and missed it, and Tyler was looking down at his phone at that moment.  Neither of us knew until after the game, Blair ever so sweetly said, "I scored a touchdown".  Sure enough we missed it.  He is a good little player.  Both Matthew and Blair were very motivated to play hard because for every three "good plays" Tyler agreed to give them a ride home from school.

Blair had to let his pet snake go...he was getting nervous that his snake was going to die in the little cage.  I was more than happy to support his request.  The snake slithered away into the wild, and all was well.

As for Evie; she keeps us on our toes and continues to entertain us with her singing abilities.  Life is better with song, and Evie will sing anything.  She can turn a regular dialog into a wonderful tune.  I will say that Evie and Alice can clash at times, but they also play so well together.  My favorite time of day is when the three older kids leave for school, and Alice and Evie begin to make believe.  I find myself ease dropping because it's so cute.  In fact that will make a great future post.

This cute dress was Natalie's and now all three of the girls have worn it.  I especially love the shoes.

And Isaiah...he is the cutest thing ever.  I love seeing his little face smile at me. The best way to get a smile is to say his name.  He loves his name.  I can't believe my baby is two months be precise he is 9 1/2  weeks. Time flies when you're staying up all night ;)  Actually the past two weeks Isaiah has done well to only wake once, sometimes twice.  

Hopefully I won't wait another four weeks to post, I will report about Alice's one year clinic visit, soon.  Until then, many thanks again to all for helping us through this past year(s).  We have SO MUCH to be thankful for.