been HEAR, done this

We found out Alexander had a severe to profound hearing loss in both ears a month after he was born. Since then, we have spent hours and hours each week in some form of speech therapy or testing.  He has been in auditory-verbal (AV) therapy for nearly 3 years.  We spend a lot of time working both on understanding speech as well as producing it. Gratefully he “graduated” from private therapy in November of last year and only spends three mornings a week in a county hearing impaired preschool center.  He loves it there, his teachers are outstanding! 

Here he is doing individual therapy with his preschool teacher on a home visit.

He is an exceptional boy. Functioning, listening and speaking just like any other 3-yr-old.  Funny thing is, he has a few buddies his age in the neighborhood who are now in speech therapy because the ‘boy who is deaf’ speaks better.  We all laugh about it.

Many of you have not been with me since the beginning of Alexander’s journey and have asked what is next for Reese? When will she get her CI’s? 

Here is the lo-down from infant to 3 for a child born with a sensorineural hearing loss. 

The road to a Cochlear Implant (CI).

1. You will not pass the newborn hearing screening the first and second time.
2. You meet with an audiologist to have another more technical screening and an OAE (Otoacoustic Emissions).
3. If you fail that, or if the results are not conclusive you are referred to get an ABR or BAER test.  This test takes up to 3 hours long and you have to keep the baby asleep the entire time or else they need to be sedated.  This test determines what type of hearing loss and to what degree of hearing loss you have. 
4. Then you go back to the audiologist to be fitted for hearing aids and molds.  If you’re an infant you do this at least once ever 6 weeks since the ears grow so quickly.
5. Hearing aids are on!
6. Weekly therapy sessions begin.
7. Repeat step 3, the BAER test,  for more accurate results. (Reese is at this phase, she has her third BAER test this week).
8. At this point it is the dividing line.  Mild to severe hearing patients repeat steps 3 through 6 for the rest of their life and severe to profoundly deaf patients go on to step 7 which is consultation for a cochlear implant.  (Reese has hers in June).  The surgeon examines the external bone structure of the patient to determine if they are a candidate for a CI.
9. If you pass that exam then you continue on by fulfilling the requirements that each hospital has prior to surgery. Most begin with the vision/balance testing.
10. Then the psych evaluation.
11. Speech evaluation.
12. Sound booth audiology test. (Sometimes these tests can be done on the same day).
13. A routine physical done by pediatric doctor to update weight and shots prior to surgery.
14. The CT-Scan.  It is painful withholding food and water for 8 hours prior to the scan when they are so young, so I never look forward to this appointment.  If the internal structure looks stable enough to support an implanted device into the cochlea then you get a surgery date!
15. Surgery!  They implant a metal device by cutting behind the ear and drilling into the skull. The thought is yummy, right?
16. Activating the CI. This happens a month after surgery to let everything heal.  Now you hear through electronic impulses to the brain. It is pretty incredible being apart of the process from here on out.
17. CI therapy begins. (You pretty much start from scratch learning to listen).
18. Frequent visits to the CI center for program updates and booth testing.
19. Then you get a second CI if you didn’t get them simultaneously. Activation follows.
20. More therapy.

Alexander is to this point on his journey.

All the driving and doctors appointments are completely worth it..  We still marvel at the moments when Alexander hears birds outside before we do, or when he jumps out of his chair at dinner yelling, “Daddy’s home!”  “He is?” I ask  “How do you know?”  “Because I hear the garage door opening!”  or the times when he hears the dryer beeping indicating it is finished before I do.

It is crazy how he can pick things out and hear them before us. Maybe because he is so tuned in and trained to listen that he hears the sounds I take for granted everyday. regardless, it is a daily miracle.

Now off to the pond for more ‘listening’ experiences!