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, October 11, 2012

Over Looked Updates

I keep forgetting to record some additional updates.  They are worthy of recording. 

First of all I did hear back regarding Natalie's counts from Monday's clinic visit.  As we suspected, they were good.  Her ANC was 1800, platelets were 126, Hemoglobin (red cells) 12.5.  We are still waiting on her more recent chimerisim.

Good news...over the past several days Natalie has not needed oxygen at night.  She is doing awesome on room air when she sleeps.  We know the pneumonia she has battled is improving, which helps her oxygen levels, as well as more aggressive therapy for her asthma. 

Recently the doctors suggested giving Natalie gluten again, very little amounts here and there to she how she does with it.  The doctors as well as us, are very interested in knowing if she truly does have celiac or just couldn't tolerate gluten due to the chemo damage done on her gut.  As her gut heals from the chemo she should be able to tolerate the gluten if she does not have the celiac disease.

I received a great tip, I gave her raw beets unpeeled for several weeks.  This is believed to help with gluten intolerance.  Not sure, but I did it anyway.  So far she has not complained about tummy pain when she has a little gluten.

Three things could be happening.  #1.  She is not telling us whether it really hurts or not. (I don't think that is the case) #2.  Her gut is healing more and she is able to tolerate the gluten.  or #3. Either the beets helped, or she isn't able to detect the symptoms of the gluten immediately.  Hmmm...we'll see.

Regardless, I hope to always be proactive and aware of what is in the foods we eat.  Being gluten free avoids a lot of processed foods and junk foods.  It forces you to find better quality.  As everything...there is a balance.

The other day I came in the house from running an errand. Natalie had a little smirk on her face.  I asked her what was so funny.  She said, "I keep sneaking on my bike to the school...I look in different classroom windows".  I was a little caught off guard.  I told her she needed to tell us when she goes.  I understand why she peeks in the windows...she wants to be there.  I wish she could be there now.

I took a big stuffed elephant to her classroom.  It will sit in her chair until she is able to be in class.  The elephant has a backpack and will bring her homework home each week.  Also we included a disposable camera for the children to take pictures of what they are doing in the classroom.  We have sent pictures with the elephant of what Natalie is doing at home.  This will help the class and Natalie to feel connected when she is able to go back to school.  The child life specialist at the hospital gave us this wonderful idea.  Thanks!!!


1 comment:

  1. Lisy, it's me, Sylvia, from Mr. Palmer's trigonometry class! Your attitude, faith, and sheer energy to keep up with everything on your plate astounds me. I am always inspired by reading your words and about the strength of your children. I don't know how you find the time and energy to lift up everyone around you but you surely do! Thank you. Thinking of you and hoping for the best for all of you.