The one phrase we hear many times a day, “Mommy, I want yogurt, cheese, baba please!” Since May, she has had very limited opening between her teeth to slip food in to eat. So she eats multiple servings of GoGurt (yogurt in a tube), string cheese, and lots of milk. There is no doubt in my mind that this child gets her share of protein and dairy a day. Yesterday she discovered an open bag of snack size raisin boxes. I lost count on how many boxes of raisins she ate. By bedtime last night her new phrase was, “Yogurt, cheese, baba, raisins please!”
Alan has been saying that he thinks she’s able to open her mouth more now. Tonight as she was chowing down on a McD’s cheeseburger, she opened her mouth much wider than she has been. Her neck doesn’t look as swollen either. Maybe we’ve turned a corner….I don’t know. These flare ups are tricky. I am hoping the flare ups will be easier to spot and monitor as our experience grows.
More good news…Dawn (genetic counselor) emailed me today to say she talked to the doctor (Dr. Hays) in rehab medicine. They decided to start Erin on a low dose of Baclofen (a muscle relaxant used on Cerebral Palsy patients) since her appointment with him isn’t until August 20th. At least we’ll see if Baclofen has helped with any improvements with her neck muscles by then. We’ll probably start Baclofen on Thursday.
