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July 2018
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This update is late, late, late. That is because, among other things Yahoo ate my e-mail list and I had to rebuild it Of course it did!. If you ended up on here accidentally let me know and I'll make it stop.
We have a lot and not too much happening all at the same time.
Josie just finished 3rd grade. She works really hard at it and is keeping up with her class. We are working with some language things to help make it all easier for her. Fourth grade next year.
In May Josie was the child ambassador for the Taylor's Wish for a Cure PH walk and fundraiser.
We also added Pulmonary Rehab to our schedules this year. Josie finished the intake program and now we go at least 2 times a week to keep the gains she made. She is one of the tiniest people there, and keeping to the schedule is a pain, but the rehab has been so good for her.
We are headed up to LPCH Stanford this weekend for a few days stay with them.
Two years ago we were thrilled to ditch the central line in favor of a new oral medicine. And overall that medicine did the job. But it is a rough med with lots of nasty side effects and over time I came to realize Josie was having a lot of unevenness in her response to it.
There is a similar medication available now with (possibly) fewer side effects and a more even release into her bloodstream.
We want to give it a try to see if it will improve her day to day life and overall health, and to do that means a stay at the Hotel LPCH/Stanford.
We are hoping this is relatively quick and easy.
School starts back in a few weeks. Josie is very excited to get back (and June is having too much fun and wants more summer).
Thank you for all the good wishes and prayers.
And thanks for staying with us on the journey.
KimPlease note, if you no longer wish to receive these updates let me know and I'll update the mailing list.
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