Daphne Updates

9-14-05 We are back from our trip to Stanford.  Daphne had a follow up Angiogram and SPECT.   The Angiogram results were wonderful!  Dr. Steinberg told us that it was one of the best revascularizations that he had ever seen.  He showed us the films from before Daphne's surgery and compared them to the new results, and it was truly amazing.  Daphne's blood flow virtually stopped at the base of her scull before the surgery... there was a tangle of Moyamoya vessels, but you really didn't see much blood flow getting into her brain.  The after picture showed many, productive new blood vessels that spread throughout her brain.  Just amazing.  Dr. Steinberg also wanted to test Daphne's blood.  He said that in a non-Moyamoya patient, the surgery that Daphne had would not accomplish anything -- you could lay a blood vessel on the brain, but new blood vessels would not "grow in".  They are studying a type of growth factor that seems to be higher in Moyamoya patients, and want to see if Daphne also has a high amount of this growth factor.

Interestingly, Dr. Steinberg told us that it appeared that a segment of Daphne's right carotid artery that had been occluded has actually opened up.  He said he had never seen this before, and isn't sure if it's an actual result, or if it could be explained by some other factor.  Nonetheless, the surgical grafts seem to be supplying just about all the blood to Daphne's brain.

Dr. Steinberg also said that it was very possible that Daphne's right-sided blindness was caused by Moyamoya.  He thought that on the right side blood may have been diverted from the eye, to the left hemisphere of Daphne's brain (where it was more crucial).  It was good to at least get affirmation that my theory on what happened to her eye is plausible.  Dr. Steinberg also said that the right eye should be getting good blood flow now, but that the damage already done to her retina is permanent.

We had a very busy schedule in California, but we were able to make a trip on Saturday to Muir Woods.  It was one of the best days that we ever had with Daphne.  Where on our last trip there, Daphne slept the whole time and was irritable on the ride there and back, this time Daphne was extremely pleasant.  She was alert, and was fascinated by the trees.  She smiled at us, laughed, and truly seemed to be enjoying herself.  She even let us stop for a late lunch/early dinner, and took a nap while we were eating!!

Unfortunately, once we got home, her tummy issues were back (Daphne may have gotten some tummy releif from having three days with very little food, thanks to all her tests).  She has still had periods of babbling, interaction and smiling, but seems more tired and gassy.

Now that we are back, I want to really get into her NACD program (we have joined the National Association of Child Development, which provides intensive programs to help brain injured children become more functional).   I hired a Nanny to help me during the week, so that Daphne gets lots of interaction and stimulation, and to help me do Daphne's program, which takes several hours a day.

9-3-05  Daphne has been babbling like crazy!  She seems to like to hear herself "talk" :)  She also has been eating half of her food by mouth.  She's very opinionated, though, about what she does and doesn't like.  So stubborn!

On Monday (Labor Day) we go to Stanford for some tests following up on her surgery in March.  She will be getting an angiogram, SPECT and an MRI.  Hopefully, we will get good news about Daphne's revascularization!  I decided to start this page to keep an update.   I'll probably be writing more in the next week or so.