Velvet

near Lewiston 7/9/14 by Jan Null

Palouse Falls

Yesterday at Beautiful Palouse Falls photo by Jan Null

Familiar Supplies - the treatments continue

This is Fi's mommy's blog entry today:

We like to try different supplies to see if they improve Fiona's treatment. Sometimes they help, sometimes they don't. For about 2 months we tried high flow needles. They didn't help. For Fiona they caused a lot of pain. Now we're back to the needles we started with. Yesterday's treatment was so much better. Other than the initial needle sticks she didn't complain at all, her infusion sites didn't leak medicine out, and she could move during treatment. I feel much better about treatments when they don't make her upset.

read Karen's blog http:  //fionafighter.blogspot.com/
help fund Fiona's cure: http://www.gofundme.com/shesafightercom

The Day Everything Changed

Karen Waller's (Fiona's mommy) blog from November 2013

I was just looking through pictures and found this........

I forgot that I took pictures that day, mostly to show Christian how pitiful she was. The yellow wrap is covering an IV. She was going on day 15 of a fever. She was dehydrated and wouldn't drink or eat anything. They had just drawn labs. A few minutes after I took this picture they did the nasal swab that showed she had 3 viruses. We wouldn't find out for a few months how severely compromised her immune system was.

When I see this picture all of my what if questions start. What if she hadn't gotten sick? What if I didn't take her to Primary Children's Hospital? What if my aunt hadn't suggested the test? What if we didn't catch it in time? It also takes me back to an appointment in July when our infectious disease specialist told us that her condition was life threatening.

As a parent I am living my worst nightmare. The funny thing is I think this is normal now. It's when I stop and think about it that I realize that this is not normal! The not normal feeling hits at weird and inconvenient times. I remember almost breaking out in tears at a grocery store checkout. I walked out quickly and crying in the car. This picture brings it all back. 
*** Keep up to date on Fion'as treatments and test results with Karen Waller's blog   http://fionafighter.blogspot.com
******Donate to Fiona's medical fund   http://www.gofundme.com/shesafightercom
http://www.gofundme.com/shesafightercom

Grangeville Sunset

Goodnight Camas Prairie

Potty Training

From Fiona's mommy, Karen:  I'm glad to say that Fiona is potty trained! No more diapers, very few accidents, and she's done! I have to give credit to Daniel Tiger for his song about potty training. "Stop and go right away," is what she tells us when she needs to go to the potty.

Fiona is a brave 2 year old suffering from a combined immune deficiency.  Your donation can help to fund her cure.  Read her story at:       http://www.gofundme.com/shesafightercom

Water

Water is a funny thing to write about. When there is a problem with the water supply it's usually found when someone gets sick. After someone gets sick and they can trace it to the water supply, then the problem is fixed. This means that if Fiona drinks tap water she may be exposed to bacteria and viruses that may be life threatening. Because of this we buy distilled water at the grocery store. Every week we haul home 10 gallons of water. That's 520 gallons each year. We also buy 2 cases of bottled purified water every week. The cost of drinking water each year is over $700. We all drink distilled or purified water, because if one of us gets sick there is a chance that we could make Fiona sick. Someday we hope to get a reverse osmosis system for our house. We had one in the past, but it leaked so much it caused a huge mold problem under our kitchen sink. I would like to get a new reverse osmosis system so we don't have to haul water and it would be less expensive than buying bottled water. Coming up with the money has been a challenge. Every time I think we have saved enough something else breaks. Today I prayed for a break in our trials so we can breathe for a little while, and have some peaceful time to recover from the past few years.

you can help - donate to Fiona's medical fundraiser at:   http://www.gofundme.com/shesafightercom