Just as I anticipated, her forehead and face has begun to swell. She’s fallen three times this week! Of course she wasn’t wearing her helmet. Fortunately all the falls this week have been on the carpet in the living room. One time she was running when she wasn’t supposed to (but isn’t that what three year olds do?). Yesterday she was simply walking and tripped over her own feet. Then today she tripped over a cord. On my Facebook page I posted about Erin’s new swellings and another FOP mom commented. Marie, from Sweden and mom to Hugo, said that she never got scared when Hugo fell on his face because she knew he wouldn’t lose any mobility. Now falling on the jaw or a arm…different story. It’s good to have other FOP family support. They can put things in a different perspective.
Other news, I spoke to another adult FOPer on the phone this morning, Steve Eichner. He gave me great suggestions regarding traveling with Erin. He told me to consider sitting in the back of the plane vs the front. He reminded me that the front of the plane tends to fill first. So if we take the two rows towards the back, we have a chance to have an extra seat between us and we can put one of the boys behind Erin to (try to) eliminate anyone kicking her seat. Plus he gave me great suggestions of places to see during our trip. Thanks Steve…I enjoyed our conversation! I had to cut off our conversation b/c Erin fell while we were talking.
Alan and my brother Sean went to Erin’s IEP meeting this morning (our car battery died yesterday so Sean gave Alan a lift to the meeting). Alan said that they will iron out the details of the IEP after school starts but basically they are going to work with her on daily living adaptations. Two areas of concentration will be potty training and keeping her arms moving. Potty training, we think Erin will always need assistance going to the bathroom. The school is going to see what they can do to help her be more independent. Then Erin isn’t confident with her arms. She doesn’t trust stairs and is scared to reach for objects. Alan said that the teacher and the physical therapist immediately had suggestions what they can do in class. Monday is the big day! I’ll keep everyone posted!!
