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Update from Stanford

August 08, 2008 by Bill Strong

We've had a very busy, but very productive week meeting with

Gwendolyn'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 the

Stanford campus and explore a bit. It's really beautiful up here; much

different from what I was taught as a student at USC smile 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 general

update 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 again

on 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 went

over literally everything with her and as usual when issues came up

she moved mountains for us and got us the person or answer we needed

immediately. As a result of Gwendolyn's growth, she changed her bi-pap

settings to 15/5 and already Gwendolyn seems to be doing better with

her "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 settings

before 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 new

button, 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 going

to 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 smile

Under the circumstances, we feel so fortunate that Gwendolyn's journey

found 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 come

a long way from being told there was nothing we could do but wait for

the inevitable, and Gwendolyn's strength is a living testament to

that. But none of that would have been possible without these doctors,

their staff, and their care philosophy for SMA patients. For that we

are blessed and forever grateful.

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