Stanford Here We Come…August 02, 2008 by Bill Strong
I just loved this picture of Gwendolyn...
Next week we'll be heading up to Stanford for a week to meet with Gwendolyn's amazing doctors, Team Gwendolyn We can't believe it's been three months already since we came home from our first trip up there. On one hand it feels like it was just yesterday that we were packing up the car and heading up and on the other hand it feels like it's been 10 years. I'd be lying if I didn't say that we are very nervous about the trip -- and have been for months. Getting out of the house with Gwendolyn in general creates risks and issues and traveling away from home for an extended period of time, something we haven't done, will be a challenge. Gwendolyn hasn't been in a car, besides an ambulance, since we came home from Stanford in April and just being away from home, out of our element, in a new environment, and without a night nurse to help out will be an adventure to say the least. But, on the other hand we're really excited about it and think that if everything goes smoothly it will be fun.
We couldn't even be making the trip if it weren't for my sister and Richard so graciously offering to lend us their RV (it's more like a tour bus) to make the trip. With all of Gwendolyn's machines and her schedule, a bumpy car ride and a hotel stay would have been next to impossible, so we can't thank them enough. My mom was so sweet to offer to go to the market to stock the RV with food, etc. for the trip. That will be a huge help and was so thoughtful. We'll be "camping" (if you call queen sized beds, satellite TV, A/C, and a full kitchen camping) out in the Stanford parking lot for the week and don't worry, we'll be posting plenty of pics of that. It's a good thing I have all of that experience driving RV's on our New Zealand trip although this one is about 5 times as long and 2 times as wide. At least it has a horn that sounds like a train WARNING - You may want to stay away from the 101 highway northbound between Santa Barbara and Palo Alto on Monday, August 4.
We have a ton of questions for the doctors and we are looking forward to seeing them all and catching up. Most of our trip will be check-ups and such, but Gwendolyn will be getting a new g-tube button while we are up there. Apparently, it's a simple non-surgical procedure and I believe after they show us how to do it this time we'll be changing them at home every three months or as needed.
We are also considering the same clinical trial that Gwendolyn didn't qualify for last time we were up at Stanford. She didn't qualify due to her weight and the amount of time she was spending on the bi-pap, but with her strength now she may be a candidate. The trial is called the NINDS Pilot Therapeutics Network program, but is referred to as the NPTUNE program. You can read more about it by clicking here. This phase of the study is to evaluate the safety and tolerability of sodium phenylbutyrate (NaPB) in children with SMA. NaPB is a drug used successfully for other disorders that researchers believe may increase the amount of SMN protein in the body and consequently decrease the severity of SMA. Although this is unproven at this point, researchers believe there is real promise with NaPB. The clinical trial would be three months and we would need to travel to Stanford on a semi-regular basis. There are many things for us to consider and we have a lot to learn from the team next week. We don't know which way we will go, but we feel so blessed to have the option of considering something that may have a positive impact on Gwendolyn and may have a very positive impact on SMA research as a whole.
Ok, I'm off to Google maps to map out every Starbucks between Santa Barbara and Palo Alto I'm not kidding either.
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Are You An SMA Carrier? Advocating for the Affordable Care Act: Gwendolyn's Story (Video) It Arrived!!! Let the Adventures Begin!
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