July 2017 update....
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Josie had a heart cath at the local Children's Hospital this month.
Stanford is still waiting for the detailed numbers to check, but the big picture is that the oral medication is indeed doing the job as well as the IV line version - so for now we call it stable and just work to keep it that way. Josie is close to the highest dose she can tolerate, so it is a good thing it's working and we don't have to try and increase the medication any further right now.
In related news, we got her a cooling vest setup to help her manage the summer heat. Between the medication working for her and the vest she is having a good time just being a kid right now.
At the end of June I took the girls on an Alaskan Cruise. It was a lot of work to pull it off but it was a lot of fun once we got going.
Thank you to everyone who follows along with good wishes and prayers. We appreciate it so much.
We really appreciate all the encouragement and prayers
Thanks for staying with us on the journey.
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