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.

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.

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! :)

more test results

Fiona's helper t-cells are really low again. Normal range is 500-2400, her level is 139. Low helper cells explain the thrush. There are still lots of tests we're waiting for. The good news of the day is that her IGG level is 1030, well within normal range. That means her treatments are working, and giving her protection. I'll keep posting as her test results come back.

Possible genetic cause

Fiona had an appointment in Cincinnati today. They've found a gene mutation on the STK4 gene. We don't know if it is manifesting or not. They need to do more tests to see if it is causing her immune deficiency. Her mutation is one that hasn't been described before, she may be the first person to have it. I'll write more later as the tests come back. Our doctor cautioned us not to get our hopes up because they haven't finished all of the testing.

appointments

Fiona has an appointment with our local doctor tomorrow. A week from tomorrow we go to Cincinnati. I'm not sure what they will say about her thrush. I've decided to take away her binky. Even though we replaced them after she got over thrush last time, I'm worried that they still may be "infected".

A long overdue update

I just realized that it's been almost a month since I've written anything. Over the past month we've been exposing Fiona to the world. I take her to grocery stores, church, and to pick James up from preschool. We've talked about the children's museum and the zoo, but I'm not quite ready yet. Every exposure causes me to worry.

This week Fiona got thrush again. It was about a month ago that she had it the first time, twice in four and a half weeks. I stopped giving her amoxicillin after she got over her last case of thrush. She's on diflucan again. When I called they said that her doctor in Cincinnati may want to see her again. Our next appointment is in July. I'm not sure what this means yet. I'm expecting a call this afternoon.

A new test result came back. It was normal. She doesn't have hyper IGM syndrome. Hopefully someday a test will show us what she has.

Treatments have been going pretty well. Three weeks ago I decided to try a treatment without anti-anxiety meds. I gave her benadryl, tylenol, and numbing cream. She did really well. Two weeks ago I tried the same meds and her treatment was awful. She cried through most of it. Yesterday we switched from three needle sites to four, and we increased her infusion time from an hour and a half to two hours. It made a big difference. She was calm during the whole treatment.

She has developed diarrhea again. I'm going to ask for a stool culture again. Hopefully it's still the same viruses that she had before. We know that they may take some time to go away. She's also running low grade fevers, around 100 degrees.