Today he had an appointment with the geneticist and neurologist that were routine follow-up appointments. After running some tests over the past 5 months the geneticist is pretty positive there are no genetic issues causing any of his problems. He suggested scheduling an appointment in a few years to see if there are any developments in the field of genetics that may be helpful at that time.
This is probably the last appointment we will have with the neurologist because he has referred us to the epileptologist. He is basically closing out Philip's case and won't be seeing him any more. However, he and the epileptologist work together in the same clinic so it is possible he would see Philip again if the epileptologist was out or unable to keep an appointment.
One of the more positive signs we have seen from Philip in the last few weeks is that his desire to move and walk is coming back. Pretty much for the last few months he has been pretty content to stay on the couch and look at books and walk or crawl only a little to get from place to place. But, lately, he has been wanting to walk a bit more and has been pulling up more than usual. He walked by himself today about 8' or so without falling down, which is a major accomplishment. Some of this improvement may be the strength coming back that the flu and surgery knocked out of him back at the beginning of February. Also it may be that he is getting back into his routine at home a little more since we have been home for almost 2 weeks now without some significant event happening.
For the last 6 weeks he has been having a very difficult time being quiet and happy in the church services, so most of the time I have been taking him out. However, he did really well a couple of services last week and we were able to sit in the entire service. That has been a blessing, it would be great if it keeps up.
He seems to have some good stretches of growth mentally and physically at times. Right now seems to be one of those times when he is gaining back some of the things he has lost, we pray it will continue in that direction.
We have a meeting with the school system on March 28 to further discuss Philip going into the special needs Pre-K. Some of the therapies they offer could be a help to him as he continues to learn. One example would be vision therapy. The vision therapist came by last week to do some further testing to see where Philip was; she seemed pretty optimistic that they would be able to help him with some of his vision issues. Since he has a cut in his field of vision on the right side he frequently only reads the left page of a book or eats food on the left side of his plate. Vision therapy may be able to help him learn to "scan", essentially learning to look back and forth to see everything--essentially what our eyes show us without us realizing it. We pray that it helps, especially while he is in a pretty formative stage in the learning process.
Thanks again for your prayers for Philip and our family, it is a blessing to watch and see how God meets every need that arises from day to day. Ethan and Joyanna are both doing good these days as well.
Ben