Wednesday, June 17, 2015

Update on Ian...April and June

In April we took Ian back to the Otolaryngologist in Cincinnati for a follow-up appointment.  The appointment had been pushed out a few times because of weather and other circumstances.

Appointment with doctor update...April:
Everything looks good.  Ian doesn't seem to have any extra fluid in his ears, and no signs of a cholesteatoma at this time.  Ian talks in a high-pitched voice.  The doctor believes this has nothing to do with his hearing, so he encouraged us to remind Ian to talk in his "normal" voice.  Ian is having a difficult time learning his letter sounds for school, and has a very difficult time hearing letter blends.  There are concerns that his hearing loss is making this difficult for him.  I don't know how to teach a child to read if he cannot hear his letter sounds. Many children with a hearing deficit in one ear struggle academically, and we are already seeing that struggle. We have the option of seeing a team that would determine if hearing loss is causing Ian to be behind behaviorally, and how we can help him.  We are putting this on hold for now.

Appointment with Audiology..April:
The hearing test was worse than last time.  That is concerning.  Instead of "severe" hearing loss, he is now considered "severe to profound" and has been diagnosed as "Unilaterally Deaf."  This was really sad to hear. A typical hearing aid will not work.  After meeting with the doctor again he said he could no longer do surgery to help Ian. The Audiologist wants us to come back for a follow-up appointment to discuss his diagnosis, and to try two different hearing aids to see if either will help him.  She would like to try a BAHA (bone conductive aid), and a CROS.

Follow-up with Audiology...June:
We met with the audiologist again yesterday.  She did another hearing test because she was concerned about the difference in results from the previous two tests.  She thinks the last test was not as reliable because she can tell that Ian loses confidence when he cannot hear a sound well.  Rather than guessing if he is hearing something, he will say he hears nothing.  She was very skeptical that a BAHA would work for Ian because he has Mixed Hearing Loss, and because it is profound.  This means he has conductive loss, and sensorineural.  To further clarify, this means the loss comes from a problem in his middle ear (conductive), such as a bone problem, and the inner ear where the cochlea and nerves are located (sensorineural).  The conductive loss brings his hearing down to a moderate loss level.  The sensorineural brings his hearing loss down to profound on certain frequencies.

After doing the hearing test again, the audiologist wanted to try the test using a BAHA on his right ear.  The results were so much better than she had hoped.  She was very skeptical that it would work.  When testing him at a normal speaking range, Ian tested at 88%!  He could hear, and articulate 88% of the words in his RIGHT EAR!!!  She masked the sound in his left ear, so that he could not hear anything, which means all sound was being registered to his deaf ear.  This is HUGE!  Of course, as the sound was softened the results were not as great, as expected, BUT he still has good hearing in his left ear to compensate for that deficit.  And, this gives him stereo sound!!!  And, the BAHA still helps sound that he cannot hear in his right ear carry over to his left ear.  This is exciting news!!!  The BAHA won't give him perfect hearing in his deaf ear, but it is helping to bring the hearing up to the conductive loss, which is at the moderate level.  We'll take it!

We have borrowed a BAHA from the audiologist that Ian wears on a headband until we can return to Cincinnati and meet with her again, and the doctor on the same day.  The doctor will be excited about these results!  We will meet with him to discuss surgery for Ian. The surgery would include the doctor making an incision about an inch behind Ian's ear and placing two screws, called abutments, into his skull.  They are very small!  The reason for placing two, is to have an extra just in case something happens to one of them. After a 4-6 month healing period, where the bone naturally grows and grafts around the screw, we will meet with audiology again to attach the BAHA to the abutment.  While waiting for healing, Ian will continue to wear his BAHA on a headband.  Once healed, the BAHA snaps onto the abutment.  It is easy to take it on and off.  Ian will be able to do it himself.

Ian's BAHA is made by Oticon Medical.  He needs the most powerful one they have because of the mixed hearing loss, and because the hearing loss is so great.  He didn't have much to say when we were meeting with the audiologist, but as we were walking out he told his daddy, "I like it!  I can hear better!"  He wasn't too thrilled about wearing the headband.   It was uncomfortable at first.  He is getting used to it.  We are calling it his "Robot Ear," which he thinks is really cool!  If you see him, make sure you ask to see his "Robot Ear" and tell him how cool you think it is!  If he is around your children, please talk to them and let them know that Ian will be wearing something on his head to help him hear better, so they are prepared when they see him again.  I think it will help smooth things over for him.  We bought him a really cool hat on the way home, so he can choose to wear his hat whenever he desires!  We think he looks pretty awesome without the hat, too!

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