While Kelly was working with Jude she encouraged him to keep his head up, and I finally got the nerve up to ask a question. Let me preface this by explaining that Kelly wasn't being mean or discouraging in her response, she was just being honest. I asked, "In your experience with children that have such poor neck control, do they ever get to a point to where they can keep their head up?" I knew by the expression on her face, that it was a "probably not". She just replied that generally, no, but there are some who do find their way, and gain control. She mentioned how there are several of her kids that were older, and still weren't able to hold their heads up. However she did say that she fully expect Jude to roll at some point.
Jude has an appointment with the neurologist on 6/15, and we have lots of questions for him. Jude is getting closer to two years, and that's when they wanted to repeat the MRI. We will also have a swallow study done, and a new EEG. In addition I am going to inquire about the special bedding to help Jude's legs. We are also going to talk to him about emergency seizure meds since the seizures are becoming more violent.
Our new found friend "Reality Steve" wrote about Emily on his blog today. As of five o'clock Emily has received almost $1000 in donations, and has a new pleothra of facebook friends. Please take a minute to check out his blog www.realitysteve.com. Kudos to him for taking a moment out of his life to recognize an 11 year old girl, he is a very neat guy.