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, March 31, 2013

Sinus Biopsy and Happy Easter

Natalie's surgery/biopsy went very well.  While she was in the OR the nurse called me three times to update me and ask for permission to take a biopsy of areas we hadn't discussed.  I started to get nervous for a moment until the doctor visited with me afterward and gave me all the details.  We are happy/relieved to say that her sinus infection is not a fungal infection.  We were worried about that, as they are difficult to clear, however, her infection is a bacterial infection called Haemophilus Influenzae.  This is a bacteria that commonly causes upper respiratory infections in healthy and immune compromised individuals.  She will be treated with Levofloxacin and Flagyl for at least one month.  Already after three days on the new antibiotics Natalie has improved.  She coughs less at night.  Also her asthma doctor suggest an air purifier for her room to help filter any asthma triggers.  I don't know why we have not thought of this sooner.  The air purifier seems to help a lot.  

Also the doctor found a polyp (an abnormal growth of tissue projecting from a mucous membrane) insider her right nose.  A biopsy was sent to the lab.  We will learn more regarding this when results come back.  Usually it's of no concern.

We are excited to see Natalie starting to feel better.  The goal is to be completely better before her trip.  The whole family, except Alice and Evie will be going with Natalie to Hawaii.

I wish Alice and Evie could come too, however, Alice isn't able to period, and Evie is a little small.  I suppose if we leave Evie home than we won't have to worry about bottles, strollers, diapers, etc.  I was having anxiety about leaving the girls for a week, but the doctors helped me understand that this trip is for Natalie and if the babies went than Natalie would be less attended to.  Either way Alice needs to be home.  I know the little girls will be well cared for by family.  I had a dream recently that we were in Hawaii swimming in the ocean.  I was holding Evie in my arms and trying to pull Natalie out of the water, while Evie was continuing to go under the water.  It was stressful, so when I woke I told Tyler, okay I feel better about leaving Evie home.  I feel more comfortable paying more attention to the older children.  It will be an amazing time for us to have this adventure and time away.  It seems so unreal, we have been focusing so hard on medical things that imaging us on a vacation is almost impossible.  We can't wait!! 

Dr. Muntz, Natalie, and Dr. Tanner
Saying good bye to Mom...Natalie was happy to pick orange for her flavor of sleeping gas.

Tomorrow Alice has clinic.  We are so anxious to know what her numbers are.  I almost feel a knot in my stomach.  She has been doing well.  She gets tired easy, but nothing more than usual.  I feel good about what her body is doing.  Tomorrow we will have more information.  Each week provides more material to make decisions regarding re-transplant.

Tyler and I know that many people are praying for Alice...we understand that if her body can pull through this without needing a second transplant, it is solely the efforts of prayer and faith to provide such a miracle.


Enjoying the beautiful weather...launching a rocket!

I love this sink...perfect for a quick bath.

Alice loves pink and purple...especially if there is a yummy treat inside.

Easter Fun
'Oh no the sun is in our eyes'!

The things you find in an Easter basket

Alice wanted to share her rings with Jessie

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