9/30 - Disappointing Audiology Appt.

5 weeks ago I shared great news after Leo's hearing appointment in Peoria. They said he had some hearing in his right ear and thought he could be helped with simple hearing aids. However, his waves looked somewhat abnormal and with his brain abnormalities, they wanted us to see a specialist. We were referred to a Neurotologist in Urbana. He is basically an ENT who specializes in hearing loss related surgeries. We were hoping to walk away from the appointment with hearing aids that would open up a whole new world for our little guy.

The neurotologist was very knowledgeable and we really like him, but he did not bring good news. He thought the auditory response we saw in Peoria might be a false positive. He reviewed Leo's MRI and was not even sure Leo has auditory nerves. The auditory nerves are one of the 12 cranial nerves in the brain stem where Leo has all his challenges. The doctor is going to have a specialist read Leo's MRI to check for the nerves. He is also going to consult with the audiologist to determine if they think Leo needs another sedated hearing test. They do not want to force Leo to wear hearing aids if they do not provide a benefit. So basically disappointing sums up the day. We need prayers #1 that he has auditory nerves.....then if he does have the nerve, we need to find some type of intervention that brings hearing to the little guy. The news on the MRI reading should come next week.

In more positive news. Leo is still doing well with tummy time. See the new pic? His tongue is also looking better. The Infant Trainer was cutting into his gums so we had to stop using it for several days. Now we are rotating between nothing, the Gibby and the Infant Trainer. He looks much better than two weeks ago :).

We think our new Tues/Thur nurse is starting next Tuesday. It will be nice if we can have full coverage again since it has been over a month!

Sammie's birthday was wonderful. Several close family members and friends made the trip to come see her and she enjoyed every minute. Thank you everyone! I can't believe she is already 3!