This update is a bit late. Blame exhaustion and Christmas.
Josie had another check up appointment at Stanford Monday (Dec 21).
The result is ..... confusing.
On the good side, Josie once again set a personal record for distance walked in 6 minutes.
But she still did not keep her oxygen sats up as well when she was getting her medication from the central line. So for now she will keep the central line in place as a back up. Darn, because right now that line is a lot of work.
The plan is to keep increasing her medication dose for a couple more weeks. When she gets to the target dose we will have some further testing done at Rady's, our local Children's Hospital. Based on that we will make a decision on whether she can have the central line removed and switch to oral meds.
Increasing the medication is not a lot of fun. it can make Josie feel pretty bad. But experience says that once we get to the final dose and she gets used to it the medications won't bother her so much.
We really appreciate all the encouragement and prayers.
Thank you again.
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