We met with Elias ear focused ENT this morning. After discussing how Aural Rehab is going and the BAHA hearing aid he is in agreement that there is still little to no response. He is still leaning heavily towards a Central Hearing loss and wants to try and coordinate a research functional brain scan during Elias MRI next week. This new scan colors the portion of your brain than is functioning. While it won’t be diagnostic it will be interesting to see how the auditory portions of the brain respond. If nothing else it can show that everything is intact or if there is an area that the channel is “broken.” We agreed to do this because it will only take 10-15 minutes more during his MRI. The doctor also gave us some positive news overall though. He mentioned that children who are profoundly deaf will babble, but then go silent. Elias is increasing his babbling. While that does not mean he is hearing, it supports the central hearing loss theory. He said that he has high hopes for Elias and his ability to communicate and one day hear. It just may take many years. But we are on the right track and he feels like everything we are doing is exactly what Elias needs. That certainly made us feel a bit more positive about a subject that has plagued us for over 2 years. We will take even the tiniest bit of positive input for this and make it huge.
Please pray for FA patients around the world. There are several families who are really struggling with transplant related issues, cancers, and sadly loss of life. Particularly the Boggs family who’s son Nicholas is at home on hospice. This week has been rough on the FAmily. There have been several somber reminders of how unpredictable and wide range this disease be to harm its patients. Thank you all for your continued support, thoughts and prayers.