Hi there - I've fallen off the blog wagon, but I'm now returning.....we went to Sunriver, Oregon for a week for the Gurry family reunion (about 50 family members from CA, WA and Canada) and had a great time. I had the slowest dial-up connection found since 1995, so didn't try to do any updates from there. In a nutshell, we had a great time - we shared a house with David's sister, Shannon, and her family (Rory, 7, Griffin, 5 and Graham 3) and combined with our crazy crew - we were quite the nut house, but a great time was had by all. Lots of swimming, bike riding, playing and quality family time. Taylor was relieved that the weather wasn't as hot as it normally is (the high temp was typically in the mid-80's) and as usual, she was an easygoing little gal. She didn't protest being passed around various family members and while she still didn't like the pool, she seemed to enjoy riding in the bike buggy (in her carseat) and watching the kids play. This is a picture of Taylor in her new wetsuit, with our nanny Julie - unfortunately the wetsuit didn't make her like the pool water any more, but she sure looked cute. And, a smiley picture from Sunriver.
The other reason I haven't written is because I haven't known what to say. We've had a roller coaster of emotions with Taylor over the last weeks and I'm finally getting my head on straight again. Inspiration has come in the form of Randy Pausch, the professor and author of "The Last Lecture" - his words finally brought me out of my funk. If you're not familiar with his story, he had a brutal case of pancreatic cancer and just passed away on July 25th. He wrote a great book about life lessons, but here is my favorite quote from him "We cannot change the cards we are dealt, just how we play the hand." David and I have decided to "play our hand" with Taylor as aggressively as possible and it's kept our heads spinning for a few weeks. Finally, after a few sad days, we were watching a retrospective of Randy's life on Dateline (or some similar program) and his wife was being interviewed about how she handled Randy's diagnosis of terminal cancer. She shared that her therapist gave her a great mantra to repeat anytime she started to get down in the dumps - "not helpful". Another simplistic thought that really resonated with us. It's "not helpful" to look too far ahead, overly worry if we're doing the right things, or just be sad for Taylor. We are focusing on helping her get better and negative, sad or worrisome thoughts are simply "not helpful." So, we're trying and doing much better. His wife also said that she was trying to "not worry so much about tomorrow, that she missed the joys of today" - I thought that was beautiful and so true. While thankfully our case isn't terminal, it has it's own unique challenges, and the Pausch family provided great words of wisdom and comfort.
Where to begin on the latest updates? Shortly before we left for Sunriver, our brother-in-law's sister, Kim, gave us a great referral to a past client/neighbor that is also an occupational therapist. As it turns out, she has over 20 years of experience with speciality training in neurodevelopment therapy. She's written several books and appears to be highly regarded. She met with us for a few days before we left for Sunriver and it was very eye-opening. She does a much more aggressive form of therapy than anything we had seen and it rocked our world a bit.
We thought we had been doing the right things - following our pediatrician, neurodevelopment doctor, and other's guidance - working with the Boyer clinic once a week for physical therapy and twice a month for vision therapy. Our new therapist, Susan, was shocked that we weren't doing more therapy and was concerned that Taylor had tight "tone" in her arms and hands and to a lesser degree, her legs. "Tight tone" simply means that her muscles are tightening as a response to lack of use (similar to a paralysis or stroke victim). Since Taylor has reached an age where she should be using her muscles more (crawling, standing, etc) and can't, her muscles have started to tighten. If untreated, this can make it much more difficult for her to learn basic skills, lead to arthritis, or even cerebral palsy. Essentially, Taylor's most comfortable position is curled up (clenched hands, bent arms, tight shoulders) so no wonder reaching for a toy or straightening her arms for tummy time wasn't working. Susan has explained that we have to first loosen her muscles and help her normal state become more relaxed before we'll make progress with more complex skills.
Because she was worried about the state of Taylor's tone, she encouraged us to embark on an aggressive therapy approach for the next month to break down her tone, loosen her muscles, and prevent more serious side-effects, while also setting the foundation for her to learn more advanced skills. We successfully applied for more extensive insurance coverage (already Microsoft covered a generous 1 hour/day of therapy - now we are approved for 3 hours/day - if you're doing the math, that's roughly $17,000 of therapy a month that is fully covered - God bless Microsoft) and are receiving treatment from Susan and our other therapists for 2-3 hours each day. This new schedule is tiring for Taylor, time-consuming for our family (David or I like to be with Taylor since the therapy is hard on her), and a bit of a leap of faith. We're now wondering if our existing team is the right team (how can Susan be so alarmed and no one else is?, or is Susan overly dramatic?), but while we try to figure it out, we're going to work really hard with Taylor to make progress.
We're still seeing the Boyer Clinic and haven't made any changes, but are well-reminded how much we have to learn. We are starting to network like crazy to learn more from others in similar situations and make sure we have the best team and have begrudgingly dove into the world of "special needs." In hindsight, it was probably a mistake that we didn't do this earlier - we had heard that you must be your own advocate, but like a lot of families, we're learning how true this is.
We'll keep you posted on our progress - in the meantime, we've already started to see progress with Taylor - her hands are much more loose (less clinched), she's tolerating her stretching exercises much more and is starting to move (sleeping on her side, kicking her feet, etc). This is encouragement that we're heading in the right direction - in the meantime, we're trying to keep all "not helpful" thoughts to the side and plow ahead in the aggressive manner that we've typically approached life.
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