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3/27/2017 Latest post:
For those of you who may not know us already....We are the Daugherty's: Kevin, Erin, Zoe and Zachary. Our family has the unique challange of caring for Erin and both kids with a genetic connective tissue disorder called Ehlers-Danlos Syndrome. Our family had a long journey of unexplained illnesses and injuries before we were finally diagnosed by a geneticist at CHOC Children's in Orange. While finally figuring out what was the cause behind our medical mystery was a great relief this was the beginning of a daily battle we fight to achieve the best quality of life we can for Erin and the kids.
Our 10 year old son Zachary has had many challenges throughout his life. On top of Ehlers-Danlos Syndrome and the associated diagnoses that go along with that he has a complication called Mast Cell Activation Syndrome: this causes him to have allergic reactions that vary from slight flushing to full blown anaphylaxis. He also has diagnoses of Autism, ADHD and failure to thrive. Failure to thrive is the medical term for being underweight..... Ehlers-Danlos causing a weak swallow, ADHD medication causing a bit of appetite suppression and the picky-autistic eater stereotype make for a perfect storm leading to failure to thrive. Last year, our medical team decided to insert a feeding tube. This was a hard decision for us however we are thankful for the guidance that led us to it: When the tube was inserted, the doctor was able to 'see' Zachary's stomach and diagnose inflamation that we would not 'see' from the outside. and, most of all, Zachary has consistently gained weight since the tube went in!!
The Ehlers-Danlos Syndromes are genetic connective tissue disorders affecting collagen. The caveat of a genetic disease is just that: it runs in families. Meaning, once Erin got the official diagnosis we moved quickly getting the family to proper genetics professionals for to confirm or rule out this diagnosis. Yes, we were originally diagnosed by Dr. Neda Zadeh at CHOC and Erin was confirmed at Rush in Chicago and Zach was also confirmed by Dr. Jennifer Coulson at John Hopkins Baltimore. We never had any reason to doubt these professionals, the diagnosis and lifestyle modifications they recommended seemed valid to us.
So, how that that even remotely come to play during a trip to Seattle?? Enter what, for us, has been a surrealistic nightmare. Zachary is our ocean lover and we were looking into whale watching excursions for his birthday. Somehow an add for Puget Sound whale watching popped up in my Groupon search....noted the prices were quite cheaper....we went from joking about 'just going up to Seattle to see whales'....to booking a surprise trip to the San Juan Islands to find orcas.
We had a wonderful trip.... visited Seattle briefly then drove to our rental in the town of LaConnor, Washington. Always such a blessing to 'just be a family' and play games and hang out with non of the busy-ness of our lives to interrupt. We rode the ferry to and around the San Juan Islands then on a smaller whale watching boat. I'll admit: the kids were getting a little bored of just seeing water BUT the captain finally reported seeing black fins!!!! We spent about an hour watching "J pod" and "L pod" families of Orcas just swimming as free as can be in the open sea. It was one of those moments where you just kinda 'get it" : We 'got it' on how important it was for our family to take a quick trip after dealing with one medical crisis after another the last year..... 'got it' that our kids won't be inviting us along, or we won't be able to drag them along on these adventures forever and we are thankful to have had another one. AND this may surprise you BUT : As God is my witness, I will never go to Sea World again. seriously. never. One glance at those animals in the environment God created them to be in and they choice is not tough.
After more board games and walking on the beach at the rental we set out for the final vacation day. We planned to keep it low key.... mostly in the car driving to a whale museum on an Whidbey Island. After that adventure we decided to drive the car on to the ferry ( right, cool....the ferries are HUGE and hold like 100's of cars) instead of driving back up the Whidbey Island to the rental. We never planned to be on the 'mainland' side of Puget Sound that afternoon.....but God had an intervention lined up for us that was truly miraculous....and completely terrifying at the same time.
The rest of this primary story is written in the "Sunday March 26" journal entry.