Big insurance company problems today. I can’t believe it. We just got back from a long weekend vacation and there was a message from Chicago Children’s Hospital, Dr. Patel’s insurance coordinator. She reported that Tufts has now denied our request to have Ella’s surgery done “out-of-network” in Chicago. We understood, and so did Ella’s pediatrician who prepared all the paperwork, that everything was approved 3 months ago. Now they’ve reneged. I don’t get it. Tufts already put out about $2500 to have the skull model made. I immediately called Dr. Marcus. She’s at home but her office manager who knows about all of this says she’ll try to do something. We’ve already bought our plane tickets and made all these arrangements. I just don’t get it!!!!! So more work to do on this and in the meantime a lot of stress. Last Friday, Ella had an appt. with Dr. Duffy, Ella’s neurologist (epileptologist). On the down side, I was alarmed to hear from him that Ella showed some spikes in her brain waves during the sleep phase of her beam test. He said that these are worrisome but later he reassured me by saying that some people have this kind of spike without ever having a seizure. But to quote him, “We should keep an eye on this”, I guess meaning that she could end up having clinical seizures from this. Despite that report, he was very impressed with all of Ella’s skills. He looked at her hands and arms and felt that there was little atrophy. He was very pleased that we are restricting her right hand to get her to work on her left. He also reassured us right away when we said we were worried that she had lost some speech skills.
Apparently, my suspicions were right that when there is a lot of progress in one area, others may regress. Ella has made so much progress in gross motor skills lately that Dr. Duffy thought it natural that she would regress in speech. Anyhow, in short, we left with some worries but also reassured and feeling good about our work with Ella. Also, and not to be overlooked, is Beth’s great work with Ella. So many exercises and time spent on walking, sitting, crawling, rolling, eating etc., etc., is due to Beth’s diligence. We are lucky to have her.