Waverly & the Puddle of Drool

January 19, 2012

Waverly & the Puddle of Drool

I took Waverly to Children's National last Friday to meet with her ENT. He is one of our favorite doctors and squeezed us into his busy schedule after I emailed him with my concern. Waverly has been waking up most mornings in a huge puddle of drool (12-24 inches wide typically). Given her lowering muscle tone and inability to shift her body weight in bed, I have been worried about her choking or aspirating on all of the saliva. He shared that worry with me. He thinks that excising (removing) some of her salivary ducts will help limit the saliva production, without overly drying her mouth.

It is a big surgery, he estimates about 3 hours. There are always additional risks with anesthesia given her Sanfilippo diagnosis. However, she has never had any adverse reactions. The benefits of the surgery could mean a better quality of life for her.

I have talked with a few other Sanfilippo parents who opted for this surgery and heard mostly positive responses. I also spoke with a few MPS specialists to get their take on whether she should have the surgery. The response from doctors has been overwhelmingly positive.

Waverly's ENT and I are going to have another phone discussion soon to answer some lingering questions. We may a surgery scheduled soon.

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Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.