Another Avery update. She is doing great. We had a few appointments last week in Seattle. Her Endocynologist put her on a low dose of a thyroid med. She was borderline low. WOW!! What a difference that made! She was functioning at about 40-50% of her normal energy. I thought this was all due to the fact they had done BRAIN SURGERY! But once she was on the thyroid meds for a few days she skyrocketed to 90%. Seriously! It was amazing. She is suppose to take it on an empty stomach with no milk products until it is digested. So when I get up to take my 12 year old to school, I wake her up to take it (and then she goes right back to sleep for about an hour). By the time she gets up for the day, she can eat cereal and not worry.
One of her doctors, Dr. Manuel Ferreira, Jr. (click for more info on him) met with us and went over her scans. He normally works at HarborView (an adult hospital) but he was called in to help with her surgery. He was one of the two main surgeons. (He is amazing!!) He told us that they tumor was the size of a GOLF BALL! We had heard it was about the size of your thumb. I don’t know about you, but my thumb is a LOT smaller than a golf ball. It kind of took my breath away. Also her optic chiasm, where the two sets of optic nerves cross, is still located behind her right eye, where is was pushed by her tumor. I asked if this will go back, “maybe” was the answer.
I also said we thought that her sight had been slowly going and she probably didn’t have peripheral vision for a long time. “For sure” was Dr. Ferreira’s answer. He said with the amount of displacement (how far it had moved) the optic nerves would have been very slowly moved there. Otherwise she would have been completely blind if it had happened any faster. So YES, I let my 8 year old play softball with NO peripheral vision! Scary. But she functions just fine, because this is the amount of sight that she has had for a LONG time. We still won’t know for another 4 to 5 months how much of this is permanent.