Gwendolyn UpdateSeptember 17, 2009 by Victoria It has been a busy few days. We are home from Stanford now and are continuing to try to figure out what is going on with Gwendolyn. We are still a bit worried, but are relieved to be tackling the issues.
She is doing fine on the antibiotic, but we are watching her closely to make sure her secretions don't start getting thicker or change color. She's still a bit lethargic and is having trouble breathing off the BiPAP, but is sleeping through the night again, so we think the increased BiPAP settings made a difference. We are having her BiPAP machine checked tomorrow to see if the calibration is a little off. The BiPAP wasn't made to be used 22 hours a day and it has been over six months since we had it checked, so it is highly likely that it is a bit worn out. We want to check the calibration and not simply switch to a new machine, however, because if the calibration is off that means the settings may be too high with a new machine. So there is some tweaking still to do. That is all happening tomorrow.
On the way home yesterday, we were all in need of some family fun and so stopped at the Monterey Bay Aquarium. (You may remember we went there last year when Gwendolyn was enrolled in a clinical trial at Stanford.) It was unbelievably heartwarming to see Gwendolyn so intoxicated by the enormous floor to ceiling tanks. She tracked each fish and was enthralled and slightly wary of the creatures slowly swimming by. As we strolled her around, she was so excited to see what was next. Bill and I were in heaven seeing her face light up!
Today we took Gwendolyn to be fitted for her AFOs. This was a very exciting event as she has been expressing her desire for purple AFOs from the moment we told her she got to choose. Beforehand, however, we took her casts off at home and were unhappy to find skin breakdown on the top of her foot and the beginnings of it on her heels. Ouch! We gave her a good bath and they seemed to sting a bit in the water because she went a bit pale again and was having trouble breathing. She usually loves her bath, so this was upsetting for all of us. She did well with the AFO fitting, but her ankles are bit tender. The highlight, of course, was that Gwendolyn got to select what color her new shoes will be. She selected purple rubber, pink Velcro, and heart ribbon -- ooh la la!!! The AFOs will most likely be ready in two weeks and all of us can't wait! We then had to rush over to the orthopedist to get the serial casting put back on until her AFOs are ready. Dr. Early added more padding to protect the breakdown, but we will go again next week to check it has not gotten worse. The good news is her ankles are almost completely neutral and so the casting has worked!