Update from StanfordAugust 08, 2008 by Bill Strong
We've had a very busy, but very productive week meeting withGwendolyn's doctors up at Stanford. We've walked more in the last five
days than we have in months and it was nice to walk around theStanford campus and explore a bit. It's really beautiful up here; much
different from what I was taught as a student at USC To be honest,we're pretty tired, but thanks to the "tour bus" we have had a
comfortable home away from home and that has been wonderful.
We met with Gwendolyn's neurologist, Dr. Wang, and had a good generalupdate meeting with him. He is such a respected researcher in the SMA
community and it is always good to see him. We'll be seeing him againon Friday before we leave for home.
We also had a great appointment with Gwendolyn's pulmonologist, Dr.Nanci Yuan. She's such an amazing doctor and person. We always feel
reassured and armed with practical knowledge after seeing her. We wentover literally everything with her and as usual when issues came up
she moved mountains for us and got us the person or answer we neededimmediately. As a result of Gwendolyn's growth, she changed her bi-pap
settings to 15/5 and already Gwendolyn seems to be doing better withher "sprints" off of the bi-pap. We'll see Dr. Yuan once more before
leaving to make sure Gwendolyn is doing ok with the new settingsbefore we go home.
Today Gwendolyn had her g-tube button changed. It was actually really,really easy. Using a small syringe, you deflate the bubble that holds
the button against the stomach, remove the old button, insert a newbutton, and inflate the bubble with water. That's it. We'll be
changing her button every few months from now on.
We also met with a gastro intestinal doctor and went over nutrition,etc. Gwendolyn is doing great, but she's a bit behind on her weight so
they increased her caloric intake from 21kcal/oz to 24 and we're goingto reasess everything at her 1 year visit.
Tomorrow we have a few more appointments and then it's off to Gilroy(the garlic capital of the world) for some downtime in the RV for a
few days before heading home. Don't ask
Under the circumstances, we feel so fortunate that Gwendolyn's journeyfound its way to the care of these amazing doctors up here at Stanford
and to our pediatrician, Dr. David Abbott in Santa Barbara. We've comea long way from being told there was nothing we could do but wait for
the inevitable, and Gwendolyn's strength is a living testament tothat. But none of that would have been possible without these doctors,
their staff, and their care philosophy for SMA patients. For that weare blessed and forever grateful.