Here is the catch up post I was putting together earlier . . .
Josie NiNi has had a pretty busy summer.
She has been in day camp with her school, but has still had an adventure or two.
We took a big gulp and enrolled Josie in first grade - we asked for accommodations for her medical condition, but none for her language delay. We will see how that works out, but in every other way Josie is ready to be a first grader. Her schoolteachers and speech therapists have done an amazing job helping her catch up.
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On the very positive note - her regular speech therapist is very excited by her progress. When her next report gets filed with insurance it looks like she will be moved from having a severe speech delay to a moderate delay. She continues to catch up and we have great confidence she will get there.
Josie had a quarterly echocardiogram and checkup at Rady's Children's Hospital. Medically I think "hanging in" describes it best. Everything looks about the same, which is pretty frustrating because we are working pretty hard to try and get to better. But stable is not a terrible thing to hear. She has a check up at Stanford in September.
We have asked Stanford for the paperwork to enroll Josie in a clinical trial for an oral version of the medication that she currently receives through a central line. If that works out we hope to switch her over between Thanksgiving and New Year (flu season allowing)
Oral medication sounds so simple, but it is not a simple thing at all. It is no more effective than the central line version - and maybe less effective. It is five days in the hospital just for the switch. And managing the medication is pretty complex. But it would be a better overall quality of life, and overall safer than a central line, so we are seriously looking at it.
We are so grateful for all of those who have hung in with us on this journey and offered your support, help, good wishes, thoughts and prayers. It helps more than you all know. God bless each and every one of you!
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