Madison finished another semester of college, straight A's. Again! She's very bright, extremely driven and she'll probably insist this post is removed once she figures out what's posted about her.
In February she was a camp counselor at XMO in Colorado, Extreme Mobility... an non-profit that hosted blind kids and young adults. She said it was THE most rewarding thing she's ever done. She was given another opportunity to do the same time this summer, which starts Sunday June 26 through July 3. As they did last year, there will be tubing behind boats, hiking, surfing, and probably another trip to the go-kart track... yes, the blind too with earbuds as counselor guide them with walkies-talkies. They'll race against the clock, against the counselors who drive wearing helmets with their face-masks covered.
We'll be headed to Boston for the international Chordoma Foundation conference July 16. Globally recognized experts are traveling in to present the latest in chordoma research, immuno and systemic therapies, along with evolving treatment options to about 100 patients and caregivers. The USC conference in 2015 had patients coming in as far away as Hong Kong... it really is a big deal and a great opportunity, and the July conference promises to be the best yet.
So wait! Can Madison eat yet?! The answer is kind of... and only tiny bites. Our primary care provider referred out to another medical group that performs a form of electric stimulation therapy that may help strengthen her throat muscles and loosen up some of the scaring from prior procedures.
Her old feeding tube was kind of a clunky thing. She now has a tiny one, mostly flush, so less viable under a blouse or bathing suit. This new one also offers her the opportunity to swim, a happy thing given what she's doing next week!
The pics below were taken this month: Camping at Carpinteria, seals in the background, and "No, you can't have a Frenchie pup :-)
Love,
The Jones'
In February she was a camp counselor at XMO in Colorado, Extreme Mobility... an non-profit that hosted blind kids and young adults. She said it was THE most rewarding thing she's ever done. She was given another opportunity to do the same time this summer, which starts Sunday June 26 through July 3. As they did last year, there will be tubing behind boats, hiking, surfing, and probably another trip to the go-kart track... yes, the blind too with earbuds as counselor guide them with walkies-talkies. They'll race against the clock, against the counselors who drive wearing helmets with their face-masks covered.
We'll be headed to Boston for the international Chordoma Foundation conference July 16. Globally recognized experts are traveling in to present the latest in chordoma research, immuno and systemic therapies, along with evolving treatment options to about 100 patients and caregivers. The USC conference in 2015 had patients coming in as far away as Hong Kong... it really is a big deal and a great opportunity, and the July conference promises to be the best yet.
So wait! Can Madison eat yet?! The answer is kind of... and only tiny bites. Our primary care provider referred out to another medical group that performs a form of electric stimulation therapy that may help strengthen her throat muscles and loosen up some of the scaring from prior procedures.
Her old feeding tube was kind of a clunky thing. She now has a tiny one, mostly flush, so less viable under a blouse or bathing suit. This new one also offers her the opportunity to swim, a happy thing given what she's doing next week!
The pics below were taken this month: Camping at Carpinteria, seals in the background, and "No, you can't have a Frenchie pup :-)
Love,
The Jones'
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