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Elijah's Story

Fall/Winter 2000

I started back to work in August of 2000. Elijah was now 4 months old, but really only 2 months old developmentally. He did well at the babysitters and we had no major concerns. The next ABR was scheduled for that October. My insurance would be changing on October 1st, so it would be easier to wait. I would also have to change oxygen companies, and that was a little nerve racking. It all worked out though.

I had a 30 minute drive to work and school started at 7:30 AM. I taught at the high school. I had to drop Elijah and Jacob off by 6:15 every morning. We fed them, dressed them and also had to pack up the oxygen and pulse ox machine. After a few weeks we got into a pretty good routine. Two days a week Jacob stayed with his daddy who took him to pre-school and then picked him up. David would go into work later on those days and drop Jacob off at the babysitter’s house.

On October 16th, we went for Elijah’s third ABR. He couldn’t eat because of the sedation and was hoping mad by the time we got started. He did finally go onto sleep. There was no change in the ABR or OAEs. We were told to come back in three more months for another ABR. I told the audiologists about my conversations with Dr. Berlin and she knew of him. She thought it was great that I was in contact with him.

I had decided to start using SEE2 with Elijah. There were several reasons for this. First of all I am a proficient SEE2 signer. I could use sign with him more easily. Secondly, my husband and the rest of our family had difficulty with the phonetics involved with Cued Speech. Last of all I felt that as long as he got any kind of visual communication it would be helpful. I only signed key words to him like “momma, daddy, milk, eat, sleep” and so on. I added more signs as we played and different situations arose.

Elijah started to make real progress at the end of October with his weaning. He could go 10-15 hours off of his oxygen. The doctor told me to “push” it some and see how he did. By early November he went over 24 hours without oxygen. The pulmonologist said if he can sleep without it he is ready to be off. I decided to wait until the Thanksgiving break to “go for it” on his weaning. He was also getting a synagis shot every month until March to protect against the RSV virus that preemies are more prone too.

Elijah did great at Thanksgiving and was weaned off of his oxygen. We kept all of the equipment for several months. If he got a bad cold, he could possibly need the oxygen again. We also still monitored him at night. There were a few nights the first two weeks when we put him back on the oxygen. By Christmas though, he was completely off with just monitoring on the pulse ox.

I continued to sign to him every day. Over Christmas break I started doing more research on the Internet. I had joined an e-groups mailing for auditory neuropathy back in October. In a great many of the emails parents discussed cochlear implants with children with AN. I found a cochlear implant team through Callier Center for Communication Disorders and contacted them. An audiologist called me back and then sent me a packet to complete. The earliest Elijah could be implanted was 12 months. He was only 8 months old, 6 months corrected for prematurity. The audiologist said it was never too early to get the information turned in. She also mentioned that they had never implanted an AN child.

We went back for another ABR on January 16th. Elijah’s ABR was unchanged, but his OAEs were absent. This really confused the audiologists. They suggested we try hearing aids and referred us to the Callier Center for Communication Disorders. I got an appointment for February 9th. At that visit they did another set of OAEs and they were present. They suggested waiting on the hearing aids due to the fluctuating OAEs. We knew we would have to do some kind of hearing aid trial before being considered for an implant, but they wanted to wait.

I contacted Dr. Berlin and he said that the fluctuating OAEs were not unusual for kids with AN. They may completely disappear. I told him that the audiologist wanted another ABR in April. He didn’t think we would need one, but if insurance was paying for it then to just do it. He also said that hearing aids would not help. I faxed him all of the new testing information.

It was February and we had made it through the winter with no major illnesses. We had all of the oxygen equipment picked up at the end of February. One major hurdle we had overcome. Elijah had finally started crawling, after a lot of hard work. It was more of a creep than a crawl, but still progress. Now if we could just figure out this OAE issue and make a decision on what was best for Elijah.


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