The Flog – The Fabry Log

I usually try to put a nice spin on things, looking at the positive rather than the negative, but Christmas week was not what I had hoped. Arizona was warm, until it began to snow, and the lemon tree in the back yard of the home where we stayed was an added perk I hadn't planned on. Still, this whole experience is weighing on us, and now Andrea is in AZ with five of the kids and I'm in Colorado trying to tie up loose ends and get some work done. We're thinking I may join her there, but things change so rapidly I don't even want to speculate.

Andrea began the "boot camp" as she calls it yesterday. I'll paste some of her thoughts below. This is a mix of home schooling and detox from the mold exposure.

I haven't heard from our mortgage company about the future of the house and whether they will give us relief. I haven't heard from the legal minds about our case. I did hear from the company that can clean the equipment and get it back to working order, but that will take at least a week. I'm discouraged by all of this, and yet I know that I'm not in control of any of it and just ask for the strength to get through today, which is about all any of us can hope for. If everything goes as planned, I'll do CFLive from Focus on the Family this week.

Thanks for your prayers. Here are some thoughts from Andrea.


Recovery day 1

I’ve been picturing this morning’s breakfast for more than a month. Really I’ve been picturing it for more than 18 months I just didn’t know it. Our four youngest children woke up today to a nebulizer, supplements, nasal sprays, hot breakfast and a swim.

We reached Oro Valley a few days before Christmas. The journey here was by far the most difficult, pain-filled season of life I could ever have imagined. It began in May of 2007 when I pulled up carpet in my daughter’s room. An innocent discovery led to a spiral of tragic and mysterious events which I will post later. In short, all 9 of my children became ill from toxic mold. The symptoms varied greatly but let me mention a few. Vertigo, migraines, seizures, type one diabetes, skin rashes, ringing in the ears, depression, short-term memory loss (this is my biggest and most debilitating symptom), abdominal pain, chronic colds, and balance disturbance. Again, these are just a few.

Three months ago we were advised by two leading mold experts to vacate our 5500 square foot home filled with clothes, furniture, baby books, and memories. We left on October 4th with the clothes on our backs and quickly disposed of those. After an outpouring of love and support from our amazing community we began a new life in a rented home close by all 4 schools. I honestly believed the experts were wrong. We would not have long term medical issues. My kids would do fine in their respective schools and not struggle with multiple chemical sensitivities as was suggested. We wouldn’t need medical testing to determine damage to our systems. Life would be better, I thought, because we were out of the house.

13 days after we moved out we rushed our 8 year-old to the emergency room with an “exploding head” and “pounding chest”. This was a common occurrence with Colin so I assumed it was nothing and life would , in fact, soon return to the normal I once knew. Our 12 year-old continued to appear ill and spoke of the chronic dizziness that had plagued him for the last year. I still couldn’t wake him up in the morning without numerous shakes and prods. The rashes that had plagued my 7 year-old were still there and my 10 year-old daughter still complained of headaches and motion sickness.

Still, I reasoned, my rash disappeared within days of our move as did my black tongue. Colin’s rashes on his hands slowly moved from the backs of his hands to his knuckles and finally his finger tips. Surely, things are getting better I thought. But deep down I knew. We needed medical help. I had been laying the groundwork to get insurance to cover a trip to Arizona to see Dr. Michael Gray. The toxicologist, Dr. Jack Thrasher ,continued to recommend him. Dr. Gray had talked with us at length the day after we moved out of our home and I was stunned at his knowledge. I trusted him.

As the days wore on and I continued to see the lack of progress I knew I had to take a risk. I could no longer wait for insurance to come beside me. I made appointments for Colin and Reagan on December 2 and 3. we packed our bags and Colin experienced his first plane ride ever to see a doctor in Benson Arizona. Dr. Gray’s office was not what I expected. A small adobe building overcrowded with patients in the middle of the desert. I questioned my decision to come with each hour we sat waiting to see him.

Then I saw something I have never seen. Dr. Gray came out into the waiting room and assured each of us our waiting was not in vain. When we did get to see him I felt a deep sense of anxiety. It took all of 3 minutes to know without a doubt he was the help we were seeking. He diagnosed Reagan with labyrinthitis…an inflammatory ear condition…he talked about his bone conduction and air conduction remaining as he has little hearing remaining in his left ear. He took a UV light and found numerous fungal colonies embedded in his skin. I never felt rushed and he answered all of my questions. In fact,we went to dinner with him and another family suffering from mold exposure. After months of deep struggle I was getting answers and things began to make sense.
The treatment protocol prescribed by Dr. Gray was extensive and daunting. It took 2 weeks to get all that I needed to begin but the reality of combining the regimen with “normal” life began to sink in. I felt so overwhelmed I could barely function. I knew that all of my kids would need to be treated as well as myself. I wondered about Chris and his office and unseen effects. I needed to take more kids to see him before I began the treatment. The holidays were approaching and the snow was keeping us indoors. I was losing what little bit of sanity I had left.

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That's where her first entry ended, but you can sense a bit of the hope as well as the despair mixed in. Thanks again for your prayer support for us. We really appreciate it.
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