Today was a day of transition, away from the raw beauty of the California coastline, and on home to Berkeley. We loved the relaxed pace of Sea Ranch, the long walks on the bluffs and daily checks on the mama and baby seals. Fires in the hearth, puzzles on the floor, naps on the window seat, and evenings in the hot tub. We will be home for just 6 days before embarking on the next adventure, Shriner's Hospital St. Louis.
I treasured the drive south, giggling with delight and nerves at how high above the ocean we were winding along that narrow stretch of route 1. Sparkling blue expanse on one side and sheer cliff on the right. I loved it, pure and simple. Nothing makes me feel more alive than the ocean.
As the road straightened and we veered away from the shore towards the bucolic farms of Sonoma County, my thoughts returned to real life and the week ahead. A busy one, full of appointments, baseball games, practices, rehearsals, and possibly a talk to Oscar's 2nd grade class about PWS (an annual event that I keep postponing, for some reason, this year) I also need to bang out those darn social stories.
And, yes, somewhere in there we need to get ready for St. Louis. We're taking the kids to Shriner's for a 5 day inpatient stay to help answer our questions about their bone disorder hypophosphatasia. They will sleep in hospital beds -- all 3 in one room -- with Paul and me nearby on those bedside chairs. Blood draws, xrays, 24 hour urine catches...a whole battery of testing that will rival Oscar's NICU days.
I've not written too much about HPP here. A large part of me wants to think it is not a big deal and that it is my own obsessive need for answers that is leading us St. Louis. But we do have two positive genetic tests (Ruby and Paul) and the boys have clinical diagnoses. Ruby has lost 3 teeth, her xrays show mild osteopenia, and she is slightly knock-kneed. Abe's feet hurt if he runs too long. His broken arm spent 9 weeks in the cast and still wasn't completely healed. The orthopedist that treated him was an insensitive jerk and didn't believe that he even had HPP. He refused to seek advice from the HPP expert in St. Louis. We are lucky with Oscar. I know he has HPP, but I am thankful we just found out. So many of the early symptoms overlap with Prader-Willi syndrome that we might have missed the PWS had we noticed the hypophosphatasia. We would have missed the opportunity to set up the early food routines that I truly believe have helped him tremendously. And the growth hormone shots he receives nightly for PWS might even be helping the HPP, but they're not approved for HPP. But...we don't know how to treat the HPP given the PWS complications. Do we supplement aggressively with calcium (as recommended for PWS) or avoid it (as recommended for HPP). What about his scoliosis, and the surgery another orthopedist is recommending?
So, yes, it's good we're going St. Louis. We'll get answers, an emergency protocol, and a definitive diagnosis so I will be armed the next time a doctor doubts me like Abe's orthopedist did.
In my heart, I trust the kids will be fine, and that compared to PWS this is nothing. But still my anxiety levels are creeping up. I feel an undeniable lump in my throat, my thoughts are racing, and there is a panic rising as I lay to sleep. I am nauseous and short-tempered.
I am trying to keep the images of that beautiful green and blue sea lapping, and sometimes crashing, against those dark jagged rocks. I am trying to feel the cool spray on my cheeks and the wind sending my hair into impossibly sticky tangles. I am closing my eyes so I can hear the waves and recall the briny scent that inexplicably centers and calms me.
But the anticipation is still getting to me. We've been home for 3 hours and I've already snapped at Abe and placed Paul's computer down on the floor with a bit more oomph than I intended. My patience is waning as the overwhelm seeps in like, ha!, waves on the shore. Maybe that is the answer. Maybe each time I feel the panic rise I can envision it receding. Close my eyes and watch it wash back out to sea. I will try.
Goodbye Sea Ranch. Hello St. Louis.