Monday, June 30, 2014

Potty training

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.

Sunday, June 29, 2014

New fundraiser

My sweet friend Julia and her kind neighbor Dan came over a few weeks ago to take pictures and video for a fundraiser Julia is setting up for Fiona. We are so thankful for them and their efforts to help us. We are overwhelmed with the cost of medical bills, trips to Cincinnati, and the things we need to keep Fiona healthy. We have tried for the past few months to put the maximum amount of money into our health savings account to pay for Fiona's care. We could just manage it until we had to repair our sewer line. Every donation goes directly to pay for Fiona's care. We are hoping to raise enough to take care of a mold problem in our kitchen, pay for this year's medical bills, and keep enough to pay for next year's insurance out of pocket. Please donate if you can, and share her fundraiser.


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.

Sunday, June 22, 2014

The zoo!

We took Fiona to the zoo yesterday. It was so much fun. For about an hour before we left she told us that she was so excited to go to the zoo. We only stayed for an hour and a half, because she doesn't do well in heat, and she can't be in the sun too long. We took the stroller so we didn't wear her out and covered her in sunscreen. We used a lot of hand sanitizer. Fiona loved the animals. She said the giraffes were her favorite. She tried to climb the fence to get to the lemurs. She told us that she needed to walk on their grass. There was a baby lemur who was hanging on a swing, and Fiona yelled, "don't worry! I'm coming. I'll save you." She loves Diego, and thinks that all baby animals need to be saved. When we got to the elephants she told us, "that's my elephant. I ride it." I think she was disappointed that she couldn't get to the animals. She loved yelling, "hear me?" to every animal we saw.

Fiona is doing really well. She's healthy and growing. In July when we go to Cincinnati they'll collect DNA samples from Fiona, Christian and me. They'll store them to see if our insurance will approve genetic testing.

Tuesday, June 10, 2014

STK4 gene test is back

Each of us has 2 copies of every gene. One comes from mom, the other comes from dad. Fiona has a mutation on one copy, but not on the other. What does that mean? I don't know. Her mutation is different from the others they've seen. We go back to Cincinnati in the middle of July. I'm going to see if we can talk to the doctor before then.

Fiona is doing really well. She's healthy, her thrush is gone. She finished Diflucan last week, so I'm checking her mouth every day. She is potty training, and I'm thankful for our carpet cleaner! :)