All is well here. We have been bogged down by snow and now the bombardment of rescheduled appointments. We are working on another MRI for Neurology. We had one in September and the doctor wants a follow-up. The exceptional nurse coordinators at the FA clinic are working their magic again with Our ENT – focused on his hearing – in coordinating to do the FMRI we mentioned last October with this upcoming MRI. Especially with the breakthrough we seem to be having with his hearing, it will be very interesting to see just what is happening inside that little boys brain.
Elias really opened our eyes and unlocked some really interesting observations this weekend. It has been amazing how he is progressing with things. In case you missed it, take a moment to read about his Saturday morning playtime. After a lot of observing and discussing we began to wonder if some of the things his therapist see as behavior related or sensory problems might be conflict. That is between his chronological age and his developmental age. They are always commenting, “how age appropriate” or “he is being a typical 2 year old.” The fact that he is able to display such cognitive displays, but is limited by his physical abilities might be creating conflict for him and for those evaluating him. While they attempt to compensate for this you can not help but wonder, as with all things Elias! there is a different component. He has been though so much already in his life, with much more to go. Many tell us they are amazed at how well he is doing particularly given the extra challenges. One other interesting observation to note. Since the BAHA settings have been turned up, we were told not to expect to see a difference. We haven’t really – still no response – when he is wearing it. Interestingly, when it first comes off, there are at times…something. Not all the time, but to get inside his head, it is almost like he responds, “hey, where did it go?” It of course being sound, even if he isn’t interpreting it – which we know he isn’t – the fact that he gives this response, likely is a huge positive.