Sunday, March 27, 2016

Some Easter thoughts

Easter is my favorite holiday.  What is a more powerful display of God's kindness toward us and His victory over sin and death than His resurrection from the grave?  During this season of uncertainty, loss and sadness, there could be no "better" time to go through this than in the newness of spring and the hope of new life.


I won't lie.  Our morning didn't start off in serenity with these deep thoughts.  Actually, I only woke up about 20 minutes before the madness began.  In a 40 minute time frame, all of the kids had to wake up, get dressed in Easter attire, open their gifts, eat breakfast and get out the door in time for church as we attend the 8:30a service.  Our 3yr old was angry at the world.  The 6yr old was a bucket of tears at the drop of any hat.  The 5yr couldn't find EITHER of her pairs of shoes.  I had to make a few different breakfast options as I didn't have enough of the one that everyone wanted; that didn't go over well.  Oh... and I didn't even touch on my husband and my own emotions.  At least there was no vomit on the radar as there was with the stomach bug that rampaged our home last week.  

Mold does not have the final say.  Disappointment and emotions don't either.  Christ does!  New life.  New earth.  Resurrection.  Revelation 21:4-5 says, 

"'He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.' He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

How I long for that day!

In Christ,
Terra

Easter 2016

I won't lie, if this whole mold experience would've started in the winter, it would've been much more disheartening.  But with the beauty and hope that spring and new life brings, it makes is slightly more tolerable.  Ultimately, Christ's resurrection and triumph over death and decay is our ultimate hope.

Happy Easter.  From our family to yours...









With love in Christ...

Take care,
The Santos Family

Sunday, March 20, 2016

Mold: Our Health Timeline, Current Plan of Action and Needs - Part 1

First, our family's health timeline for a better understanding of what lead us to this point...

2006/07
  • James moved into the home in 2005. We married and I moved in September of 2006.
  • I (Terra) got pregnant right away and experienced a typical amount of morning sickness.
  • I developed a strange rash that was later diagnosed as Pityriasis Rosea. It lasted for 3 ½ months.
  • During this time, James began developing arthritic pain in wrists (primarily). Later he was diagnosed with Rheumatoid Arthritis. He attempted numerous recommended pharmaceuticals but all came with too many side affects and he chose to forgo them all.
  • I noticed unusually swollen, slightly crusty eyes each morning upon waking.  After giving birth, my eyes became very dry and itchy and I couldn't tolerate contacts for over a year.
  • I continued having numerous but increasingly painful headaches/migraines (started as a teen).
  • I was induced for the birth of Hannah 2 weeks before due date due to my “placenta giving out” and ultimately the umbilical cord was very thin at her birth. She had exaggerated jaundice, was a very colicky baby with reflux and regular congestion.
  • We discovered that Hannah was completely intolerant/allergic to both dairy and soy products. She also battled light eczema.

2008
  • James began experiencing a significant amount of chest pain.  He had scope and testing ran and they found no physical problems.
    I experienced my first miscarriage around 5 weeks gestation.
  • Hannah began a long journey with recurring ear infections.
  • Hannah got pneumonia around 18mo old and was treated with a nebulizer and steroids.
  • I had my 3rd pregnancy and a greater increase in morning/all day sickness.

2009
  • I experienced my second bout with Pityriasis Rosea but it was shorter lived.
  • Our 2nd child Benjamin was born. He was generally a happy baby but struggled with reflux and congestion.
  • I had an increase in my headaches and muscle pains (mostly shoulder/back).
  • I began experiencing severe bouts of vertigo, ringing in ears, nausea, itchy ears and headaches. Numerous doctors and specialists were consulted, tests, etc. were performed and everyone kept telling me all of my tests were normal. I was told that I may have an anxiety disorder.
  • I had my first ever (and extremely intolerable) sinus infection.
  • I had 3 plantar warts removed.
  • I had 2 breast fibroids acknowledged by ultrasound and mammogram.
  • Hannah got ear tubes to help with recurring ear infections.
  • Benjamin always appeared sickly to me (and still does often). He has very pale skin and sunken dark eyes.

2010
  • I was diagnosed with BPPV (a type of vertigo). I was treated in office and at home with special physical exercises to put the “loose crystals” back where they belonged. Regardless, I still continued to struggle off and on with the vertigo, ringing, nausea and headaches.
  • I got pregnant with our 3rd child (fourth pregnancy) and experienced even more morning sickness. To date, it was probably my hardest pregnancy.
  • I started having strong chest palpitations, racing heartbeat and panic attack-like symptoms. I thought I was having a heart attack on one occasion. I wore a heart monitor for a month, had a stress test and ECHO performed. Cardiologist could find no cause for symptoms and suggested “pregnancy related stress.”

2011
  • Our 3rd child Sophia was born, who also struggled with reflux and constant congestion. She had a clogged tear duct for first 6 months or so of life.
  • I continued to have strong and difficult ENT symptoms as mentioned previouisly.
  • James' RA continued to heighten in both frequency and intensity of flares.
  • Benjamin started experiencing regular bloody noses. They came almost nightly and sometimes during the day.

2012
  • We became pregnant again and gave birth to our 4th child Daniel. It was another difficult pregnancy. I noticed right away that he was struggling with reflux and congestion.
  • About halfway through my pregnancy, my legs began feeling extremely weak. I thought it was from some dietary changes but when I shifted back, the weakness continued. It lasted for the remainder of the pregnancy.
  • Benjamin's nosebleeds continued.
  • Hannah and Benjamin started having regular dandruff or psoriasis on their scalps. It was treated with topical steroids occasionally as needed.
  • I began waking because my hands or arms were often numb, regardless of my position while sleeping.

2013
  • Sophia started getting nosebleeds and so did Hannah, though to a much lesser extent than Benjamin.
  • After a long bout with a rash that wouldn't go away, we discovered Daniel was also dairy intolerant. He started having constant colds/sinus troubles that would not resolve.
  • The kids started having “peeling skin” mostly on their fingers and feet. Pediatrician couldn't find a reason why.
  • I experienced another miscarriage around 5 weeks gestation.

2014
  • The month following my miscarriage, I became pregnant again with our fifth living child Abigail. I experienced severe morning/day sickness. She was born and immediately struggled with reflux and congestion. She was very hard to console unless she was being carried. I discovered she was intolerant of dairy as well.
  • James was told by a psychiatrist that he was struggling with depression. At the same time, I felt a great struggle personally with anxiety.
  • Daniel continued to have constant sinus troubles.
  • I realized that Daniel had never had a solid stool. He constantly complained of stomach and eye pain.
  • Daniel began struggling with severe anger issues as well as head banging and multiple sensory processing related problems. Nearly every time he woke up (from a nap or overnight sleep), he was extremely irritable.
  • Benjamin started telling us his head hurt and his eyes were blurry and shaky. He often experienced swollen lymph nodes in his neck.
  • We started changing our diets around this time and noticed that removing gluten and later corn decreased the nosebleeds and eczema tremendously. We stuck to a gluten-free, corn-free, mostly dairy-free diet. We decreased processed foods and greatly increased “real” whole food consumption.
  • My headaches and vertigo greatly decreased with dietary changes and my avoidance of many high histamine foods. I began to notice a great deal of brain fog and forgetfulness.
  • Hannah formed a benign cyst on her upper lip that was surgically removed.
  • After heavy rains and a pipe problem, our finished basement flooded. We had it professionally cleaned and remediated.

2015
  • I tried to teach Benjamin reading and writing, both of which he was extremely struggling with and did not seem to improve with therapy. At 6 years old, he still regularly struggled with day time wetting. He was generally very emotional.
  • James' exercise tolerance decreased noticeably. He ran a marathon in 2014 and struggled to run at all in 2015. His breathing became harder, his recovery longer and stamina decreased. He continued to have longer/harder RA flares.  He experienced a lot of muscle tension and soreness mostly in his neck and back.
  • We found out through testing that Daniel, James and myself had numerous health issues (now documented by blood work, urine and stool samples) through testing with a local functional medicine doctor.
    • I received confirmation of histamine intolerance for myself.
    • We all had multiple food sensitivities.
    • We all had many nutrient deficiencies despite a good diet.
    • James' cholesterol and inflammatory blood markers were very elevated. Both he and Daniel had secretory IgA in stool samples.
    • Read more on specifics here: James, Terra, and Daniel.
  • My menstrual cycle never returned after the birth of Abigail and cessation of nursing.  I noticed that I frequently needed to urinate, even in the evenings without additional amounts of liquid involved.
  • A friend moved into our home and within a month or so, experienced her first epi-pen requiring allergic reaction (though while on a trip out of town). She followed up with allergist who said she was responding to nearly everything on her allergen panel and began treating her with allergy shots. Around the same time, she seemed to catch a very strong viral infection that was also diagnosed at the ER with a simultaneous ovarian cyst rupturing.
  • Daniel had 3 months or more of occupational therapy. His speech was considered behind for his age and though his speech did improve somewhat, most of his other issues did not improve.
  • The pediatrician noticed that Daniel's tonsils were extremely enlarged and suggested getting a sleep study and ENT to check them out for possible apnea. ENT couldn't explain why they were enlarged.
  • After what appeared to be a few bug bites, James went on to develop an extremely itchy rash that three different dermatologists deemed different forms of eczema. Regardless of medications, phototherapy, antibiotics, steroids, etc., nothing made it improve. At the end of December, he took a trip to the Philippines to visit family and his rash made great strides in improvement.
  • I noticed that my eyes often watered when I was in my bed.  I had another plantar wart appear.

2016
  • The kids' nosebleeds seemed to be slowly increasing again despite dietary changes.
  • I still had no return of my menstrual cycle even after attempting a progesterone induced cycle.
  • Upon returning from the Philippines, James' rash got incrementally worse. He said his mouth tasted like metal. His rash did diminish somewhat when he slept in our living room versus our bedroom.
  • We had Benjamin evaluated by an ophthalmologist for visual processing issues and were told that he was in the 5th percentile for his age and needed vision therapy.
  • I noticed my own eyes seemed "jumpy" when I was trying to focus them.
  • We decided to have our home checked for toxic mold. We found three of the most problematic ones in our home (as well as those others that are no big deal).  Life suddenly made more sense.

Other things that have happened over the course of all these years that I can't pinpoint to a particular year:

Prior to living in our home, I've personally struggled with recurring ear infections, headaches, chemical and fragrance sensitivity, dark circles/bags under my eyes (even as a child) and problems with balance.  For the last few years, I've had an off and on noticeably itchy jawline (often after eating various nuts but not always). We've experienced frequent and recurring strange illnesses, colds, fevers, rashes, sore throats, post-nasal drip, etc. We've had weakened immune systems and "catch" everything.  I've often experienced feeling weak, fatigued, muscle soreness and spasms (back/shoulder/calves). The kids have complained of pains in their legs (which I brushed off as growing pains). The kids are almost all less than 5th percentiles for height/weight and those numbers have decreased over the years as their growth has slowed tremendously. They all began life in the 50th percentiles or higher. There has been very little height and weight gain up to this point. We are a very physically clumsy family. ;) We've always had excess static in the home but I've always chalked it up to the fact that we like wearing fleece clothing to keep us warm. James has had really extreme seasonal allergies and nearly year long red eyes. Several family members often experience random flushing in various places of the face and ears. Lastly, for the past several years, I've been very quickly winded when climbing stairs or walking fast/running.

Where do we go from here?  Click here for part 2 of this post.

Mold: Our Health Timeline, Current Plan of Action and Needs - Part 2

*If you haven't already read part one, click here to see what has led us to this point in our journey*



~~~

If you've hung in there and read our health timeline, you'll see that we've fought this battle long and hard. We have sacrificed a great deal of time, money, energy and life. We feel it's time for real healing and at this point for us, that means being radical. We have been and continue to do an extensive amount of study, research, personal interviews, and so forth. We are actively seeking out medical specialists for treatment and healing. It has been 11 long years of physical illness and it is unlikely that things will get better overnight. We realize we may have quite the journey ahead of us.  They say it may get worse before it gets better.

Many of you are asking us what we are doing with this information, as well as why we are making certain choices. Please know, these have not been easy decisions to make. In many ways, we feel like our hearts have been ripped out of our chests. For various reasons, including the types of mold we have (3 of the most toxic), their spores, fragments, our health issues and potential cross-contamination, we've chosen to leave most of our belongings behind. Yes. You read that right. We have been encouraged by two doctors and multiple other sources that have walked this hard road before us to “treat it as a fire” and not look back. We have minimal items with us at our temporary location but when we begin treatment with our doctor and move to whatever longer term home we plan to stay in, we will have to start 100% new.  We will store especially sentimental and valuable items for a time and later try to reintroduce them into our environment.  We should then know if we can tolerate them with proper cleaning.

What emotions are we currently struggling with? Everything. Overwhelm with all the decisions that need to be made. Fear in finding a safe place for healing. Grief and heartache over the loss of our home and personal items. Sadness over the trials we've faced and the time we've lost that cannot be recovered. Anxiety over how others will receive our story. And yet hope. We have great hope for healing but ultimately, being able to show the beauty of the Gospel in our story.

James and I have been extremely blessed with good family, friendships and community. Right now our cry is for you to be there and listen.  We realize that there are differing views to mold and the problems it can cause.  Again, we have done a great deal of research and continue to do so. What we strongly desire right now are those willing to listen, be sympathetic and support us in our decisions, even if you don't understand or agree with the details. We will likely need shoulders to cry on and ears to hear our trials. We wholeheartedly covet your prayers in discernment, wisdom, and direction.

With all that said, many of you have asked us how you can practically serve us during this transition. If you desire to do that, read on. Some friends set up a fundraiser for us at: www.youcaring.com/santosfamily.  As you can imagine, it's going to be very expensive to start all over. We are a family of seven. Though James has a well paying job, we already have a strained budget because of our medical expenses. We are currently living on more minimal items at our temporary location.  However, when we get somewhere longer (short) term, we will not be able to bring our belongings with us.  We were specifically encouraged not to take used clothing or used household items from others because of the potential of being re-exposed to molds unintentionally. In addition to the YouCaring site, gifts cards/cash could also be ideal for practical needs (think Amazon, Costco, Target, etc). We will need to purchase items like clothes, shoes, air mattresses and bedding, air filters for where we move, kitchen items/appliances, towels, toiletry items, and so on. We will also be incurring even greater medical costs as we seek out the help of specialists. Currently James and I both have appointments with a specialist in California that will cost approximately $1120 each without lab tests and travel expenses.  And this seems to be industry standard from our research.  We will be making decisions about the remediation and the sale of our home.  We will likely need funds for our realtor and potentially a lawyer.  We need to find a temporary place to live and will be likely be paying our mortgage plus rent until we sell our home.  And the list goes on. You can imagine the anxiety that could be prone to come without the peace of God in all of this.

We are clinging to these word of Scripture:
“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.”-  Philippians 4:4-9

Please be in prayer for us during this difficult time. Pray that we will be anchored in the present with Jesus in all we think and decide. Pray for wisdom and courage as we work with the remediation company, insurance adjusters, realtors, and attorneys. Pray for vulnerability and transparency with those we love with our emotions and exhaustion. Pray for resilience and endurance as we navigate through many decisions and share our story with people.

 If we are slow to respond to a request, it is simply because we are overwhelmed and trying to process everything while being strong for our kids. We are so grateful for you all.

Much love in Christ,
Terra (and James)

If you're interested in reading or learning more about mold illness, check out these links: