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.

Friday, December 30, 2011

A Visit From Matthew--Day 9

Natalie has been so brave today. The pain is getting worse and she is more uncomfortable each day. She is trying so hard to be a good sport, which I think helps her endure. She has not required any transfusions today. I have to admit I was a bit nervous today because she had a fever of 102.7--which later I learned can be common by day 9. The fever broke on it's own, thankfully, we hope that it is just a routine thing. Her hair is beginning to fall out significantly, after a day or so of this, she will be more anxious to cut it. I think tomorrow will be a good day to have a spa party. Tyler will come up and we can shave his head as part of our spa party. She is so excited to see her dad with a bald head...I told her it won't be much different. :)

Natalie has a morphine pump now to control the pain. It hurts so bad to swallow and talk. She had some struggles today regarding this. She periodically vomits because of the stomach acid, then it hurts terribly against her mouth and throat sores. Moments ago I was playing checkers with her and she started to cry as she held her head and said, "no, no, no, please no, I don't want to throw up" trying to tell herself to make it go away. It takes a while for her to calm down and feel somewhat comfortable after such an event. I wish so bad I could make it all go away.

This afternoon Matthew was able to visit her...for the first and last time. Her face brightened right up to see him. They played checkers and she beat him...she is good (lots of practice). He did some dances for her and kept his mask on the entire time. She was getting so sleepy but wouldn't fall asleep because she was afraid that if she did, he wouldn't be there when she woke.

We read stories together and articles from the Friend. I gave her several foot rubs. Things are always better after a foot rub. I have Evie with me and considered sending her home, but she talked me into leaving her here. She had truly enjoyed her baby more today than ever. Natalie is so amazing!!! We are so proud of her.

Lisy
Posted by at 11:44 PM

3 comments:

  1. AnnaDecember 31, 2011 at 7:09 AM

    I'm so glad that Natalie got to visit with Matthew and that her sweet baby sister is giving her comfort. I'm glad that miracles sometimes come in small sizes.

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  2. EfamilyDecember 31, 2011 at 3:29 PM

    Hi Natalie my name is Ali Eisenach, and I am working on a recipe book that is going to help raise money for your family. I am really excited about this project! You are such an amazing little girl! I just wanted to tell you that I LOVE the turtles you have been drawing...they are so cute! If it is OK with you I would like to use some of your cute turtles in the recipe book? Maybe we can hide one on each page.....so when little kids look at the recipe book it will be a "seek and find". See if your mom can email me the digital files of your turtles. Also I was going to tell you that I have four kids, a daughter that is 9, two boys ages 7 and 4 and a little girl that is 18 months old. When my kids saw the pictures of you and your family they said "MOM when can we play with those kids???" So when you get to feeling better we will have to do some playing! We live in Salt Lake City right now, but we are looking to move sometime soon? My daughter Addy LOVES horses so we are hoping to live somewhere that she can ride horses. I will keep in touch with you and let you know how the recipe book is coming..... Keep smiling, and hope you get feeling better soon. Take care.

    Ali

    ReplyDelete
  3. StrongsDecember 31, 2011 at 11:43 PM

    Wow! The Recipe book sounds like a wonderful idea...I can't wait to get mine! I am constantly amazed at the kind hearted people who feel so driven to help. I am humbled and inspired by their examples of love and charity. Natalie, you have some amazingly good and faithful people collectively praying on your behalf. Do you know what that means? It means that without a doubt, things will work out for the best for you and your family. It is nearly 12:00, and I wanted to wish you a happy new year. I am certain that this new year will be filled with miracles and blessings for you and your family...and you deserve every one of them. Love to you all, and a very happy new year- Sis. Strong

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