I have talked to so many people at different times, I am just going to write everything up and share this post everywhere. If I repeat myself, I apologize.
The kids have had a great start of the school year. Getting back into the homework swing was tough, but otherwise this has been a great year. JJ is really doing well with her reading and spelling, and Josie is really liking math and managing to keep up with her language homework as well.
Even better - for the last two years by this time Josie had pneumonia. So far hardly a sniffle. I'm sure this will get more challenging with colder weather, but so far the very small class size at her school has really paid off!
The big news is that we have arranged for Josie to be enrolled in the clinical trial at LPCH/Stanford. This is the clinical trial to see if she can take an oral form (more like a swallowed medical device in fact) of the medication currently delivered via her central line and pump.
It will be quite a bit of time and effort, but a central line is not the safest or easiest thing, so we are glad to give it a try.
Joe and JJ will hold down the fort at home. Josie and I leave for Stanford Nov 11. On the 12th they will evaluate her, and if it looks good will enroll her in the study. After that, as soon as a bed is available, she will be admitted to try and switch her. The pump will be slowed down as her oral meds are increased. We expect to be IN the hospital for at least 5 day - maybe more as Josie can be sensitive to medication changes.
Once she is switched we will be back up to Stanford at 3 weeks, 6 weeks and 12 weeks - so it is a travel commitment for sure. If everything looks good at the 3 week check we can arrange to have the central line removed. That will be a great Christmas gift.
Thank you to everyone who has supported us and prayed and brought us dinner over all these years. It means so much.
I'll update as we go along
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