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.

Wednesday, December 28, 2011

Mouth Sores

Natalie's mouth sores presented themselves yesterday morning. She complained that her mouth would not open fully, so I did my best to examine it. Sure enough on both sides of the inside of her jaw were two white spots, looking raw and unwanted. Throughout the day she seemed able withstand the discomfort as Grandmother came to play with her. Into the evening things became worse as Natalie began to complain of soreness in her throat and mouth. I have been diligent in having her do an hourly mouthwash, but that too is becoming even more painful as the antiseptic might as well be salt on an open wound. Around 6am she could not sleep anymore as the pain was too uncomfortable to bare without medication.In addition to the medicine, I rubbed her feet until she fell asleep. Seems like rubbing ones feet has some sort of comfort property to it that works well in times of discomfort. At least it seems to be for Natalie. We will see what today brings as the sores should make their presence known even more in her mouth and throat.

I was sent this link this morning by a friend. It is about the bubble boy 40 years later. It really is amazing how far we have come since then regarding SCIDS

http://www.cbsnews.com/2300-204_162-10009228.html?tag=page

Tyler
Posted by at 8:43 AM

8 comments:

  1. BarbDecember 28, 2011 at 11:51 AM

    I have this wonderful medicine for canker sores that basically acts as a permanent band-aid in the mouth and eliminates the pain. It is called "debacteral" I have two applications here (each can be used for mulitple sores). Would you want to try it. It stings to put it on but in five minutes there is zero pain.

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  2. Fitsups.comDecember 28, 2011 at 11:56 AM

    Have you heard about essential oils? There is a company in UT that is the only company that has certified theraputic oils. THe oils can fight bacteria and viruses. I use them and love them. They work! Use Basil for mouth ulcers, or lavendar for the pain. Peppermint is great for nausea and ginger or peppemint good for vomiting. There is a blend used for fighting germs, bacteria and viral. I diffuse the blend every night in my kids rooms, and it has made a huge difference in how often they are sick, and how sick they get. There are even oils that helps stimulate the immune system. They are all natural, and work great. If you are interested in learning more let me know and I can send you info and who to get in touch with. I have an 8 year old and hate when he is sick or suffering, so I can only imagine how you feel watching Natalie suffer. Take care. My email (fitsups@yahoo.com)
    Here is a website to learn more http://www.mydoterra.com/needoils/

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  3. The Nelson'sDecember 28, 2011 at 1:43 PM

    This comment has been removed by the author.

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  4. The Nelson'sDecember 28, 2011 at 1:45 PM

    The Nelson's said...
    I feel so sorry that Natalie has to go through so much pain. Hopefully the sores won't last too long.

    The link on Bubble boy was very interesting, especially the part that said it only effects boys! Thank goodness for new technology and medical advancement!

    I was talking to a friend of mine who has two kids with PKU. She told me she is on the panel/comittee for newborn screening for the state of Utah. They are currently in the process of researching the cost involved with adding SCID to the newborn screening. I can get you her info if you ever want to talk to her about it.

    Take care and know that you are in my thoughts and prayers!

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  5. Heber and his "Deli" aka: AdeleDecember 28, 2011 at 4:39 PM

    I have to tell you what beautiful children you have. I don't know you, just came upon your blog through a friends. My heart aches for your family and that pretty little girl. I feel odd telling you this, but I feel you should know I am praying for your family and have put her name in the temple in Columbus, OH.

    God bless you.

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  6. Jill HeapsDecember 28, 2011 at 8:23 PM

    I have met David Vetters mother... she is a huge advocate for SCIDS and an amazing woman! I am so sorry Natalie has to have mouth sores! We are praying for you!

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  7. AnnaDecember 28, 2011 at 8:58 PM

    Poor, beautiful Natalie. We love you so much. We hope your mouth gets feeling better soon!

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  8. GaryDecember 28, 2011 at 10:33 PM

    From Grandmother, Marlene Fish
    Dearest friends who we know and those angels whom we have never met,
    Your outpouring of love, comforting words, generosity and concern on behalf of our children and grandchildren are truly, the most priceless and appreciated loving hands to have ever touched their and our lives under such circumstances.
    It is our fondest desire and earnest prayer that you and yours will be so equally, blessed; just as you have blessed our grandchildren and their parents.
    With gratitude and awe,
    Marlene and Gary Fish

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