At times Ella seems more alert than ever before and she’ll look very much like a normal kid (lack of symetry in her face excluded of course). Like when she’s sitting very tall and very much in control of her movements and expressive. However, often she still seems to be less active and far, far behind developmentally. She’d doing well in the stander. She’ll stay in it for about a half an hour at a time while she’s watching a video or she’ll just be willing to play with her toys while standing in it. It’s amazing how quickly she became accostumed to it. She cried and whined only the first two times!. The gait trainer is still more uncomfortable for her. She doesn’t get mobility idea yet but when she gets excited while in the gait trainer she “tap dances”. She even seems to try to dance some in her stander when her favorite “Buba Matti” songs are played on the VCR. We’ve been taking her swimming every Sunday. She loves that and gets very excited in the water.
Her favorite game is still throwing things on the floor and hearing them drop. She laughs more now so it’s cute when she find something she really likes. All told, the changes are incrementally small but the graph is up. We’re still trying to figure out where to do her plastic surgery and we hope to talk to NYC Institute of Constructive Surgery this week (Dr. Macarthy). We have some questions mostly regarding the timing of any surgery. We are concerned about a letter from Dr. DeLacure who is slated to do the surgery down there. He reported that Ella’s facial nerve is paralyzed on the right side. If anything it is more paralyzed on the left and besides, that’s totally not true. Her right side (the large one) is very expressive! So that is another point that needs to be clarified because the danger with the surgery is the chance of damaging the facial nerve. We certainly don’t want the surgeon to have the attitude that it doesn’t matter what happens to the nerve!