Day One-- October 24, 2001
Well, the day had finally arrived for my son Elijah!! He was going to receive his speech processor and be turned on today! My husband and I were very excited. We knew it would probably scare him, but he would hear.
We arrived at the audiologist’s office a little before one o’clock. We were led back to a room with a computer. The audiologist got out all of the equipment and we waited. She explained the processor and where the different cords went. She then put the harness on Elijah and then the processor. The coil was put on his head and then a microphone behind his right ear.
She then checked the internal components of the processor and said that everything was working correctly. He cried some, but there was no sound yet. She then said that she was going to presenting him with some clicks to run the telemetry part of the mapping of Elijah’s electrodes.
The audiologist gave us some warning and then turned on the clicks. Elijah immediately started crying and buried his head in my chest. David had to get his juice bottle so we could calm him down. He did calm down once the sound became quieter. We then had five more electrodes to test. He cried each time. His thresholds were set and he was turned on to hear speech and the sounds around him.
He cried and cried while we were talking. His volume was set on one and the microphone sensitivity was set on one also. It could not be turned down any less than that. The audiologist reset his thresholds to be lower and we tried again. He still cried so his thresholds were lowered once more. She decided to try to distract him with bubbles. This did the trick. He stopped crying and calmed down. His volume was raised to nine and the microphone sensitivity was set to eight. We later turned down the volume to five since we would be leaving and going out into the loud world.
The audiologist then explained all of the equipment to us. We got all kinds of cords and learned where the batteries went. We got a dry pack that we needed to but the processor and cords/coil in at night to pull the moisture out of it. It was not too overwhelming, but boy it was just a lot of stuff. Elijah would have it all! We made another appointment for the next week to go back in and redo his map. The audiologist was hoping we could raise the thresholds on his map. David ran all of the equipment out to the car since we had another appointment.
Elijah seemed to look around a great deal, but didn’t seem to be bothered by the sound. I turned his volume up throughout the afternoon. He did well on the way home, but the coil kept getting knocked off when he moved around. I decided that he would not be able to wear it in the car for the time being. We went to my mother’s house. She had picked up Jacob, our five year old, at school. David went into work. We had dropped his car off at my mothers so that I could stay with the boys and eat dinner with my mom. Elijah seemed to vocalize a bit more, but didn’t seem to notice a lot of sound around him. The audiologist had mentioned as we were leaving that he was probably being under stimulated, but that was alright with us. We wanted him to become accustomed to it. I knew it might take a few tries to get a good map on his processor.
I later drove us home and took the processor off of Elijah. When we got home, I put the processor back on Elijah. I then turned it on. He immediately looked up at me. At least I knew he had heard something. It was almost time for bed and so I had to get medicine down both boys and do a few things before their bath. We played for a bit then put him to bed.
DAY 2-- October 25, 2001
Elijah would be staying home with his daddy today. I woke him up around six in the morning. I got him dressed and then got the processor ready to put on him. I turned the volume down to three so it wouldn’t scare him as much. I turned it on and then placed the coil on his head. He immediately started to cry, but not as hard as the previous day. David quickly came in with Elijah’s breakfast and we got him distracted. While he was eating I slowly turned the volume up to nine. He would stay on that all day.
I helped get the boys settled with their daddy and I went to work. David took Elijah to his first auditory/verbal therapy session at ten that morning. Things went very well. He sat in a high chair and worked very hard. He copied the “mmmm” sound and also made an “eeee” sound. The therapist was quite impressed with how he did. I would be taking him on Wednesdays in the future. The next mapping was schedule for a Wednesday, so it would be almost two weeks before I could go with him to therapy. David would be taking him the following Thursday and every Thursday after that.
David brought him home and they played and ate lunch. He soon went down for a nap. I picked Jacob up from the babysitters and took him to get a flu shot. We came home to Elijah still napping. I got some things settled and he soon woke up.
We played in brother’s room with the trains. He seemed to turn when I made the phone ring. He also seemed to hear the nebulizer when I turned it on for his breathing treatment. I have had to say “no, no” quite a bit and I think he was slowly learning what it sounded like. It is hard to say though.
We ate dinner and I made all kinds of yummy sounds while we ate. He said “eeee” quite a bit while I am cooking and I reinforce it by saying “eat, eat, yes eat”. We later go out to play. I don’t notice him noticing sound much, but he was too busy walking. He loves to walk and walk and walk. We came in and did another breathing treatment and had a snack. I took off Elijah’s processor and gave him a bath. He took his bottle and went on to sleep.
Some things I did notice were that he said the “mmmm” for a longer duration than in the past. We did wave bye bye to a neighbor and usually he just moves his mouth. Tonight he did make a “b” sound while waving. He had never done that before. He had already been saying “mamamamu” a lot, but did it more earnestly now. Tomorrow I would be staying home with him.
DAY 3-- October 26, 2001
We got up around 6:30 in the morning. Jacob had to be at school by 7:45. I woke Elijah up and got him dressed. I turned the volume down on the processor and then turned it off. I put the harness on him and the processor with the coil on his head. I then turned him on. He didn’t cry this morning. I was happy about that.
While he ate his breakfast I turned his volume up to nine. The audiologist had told me if he did well on program one at volume nine and microphone sensitivity at eight then to go to the next program. He had been on those settings all day on the previous day. After I took Jacob to school I turned his processor on to program two with the volume at four and the microphone setting on eight still. He didn’t seem to mind it. I later turned the volume up to seven. The audiologist had told us that when we went to the next program the volume setting on it at four or five was like the previous program on volume nine. I am hoping we can go to program three tomorrow.
We cleaned house with daddy. The vacuum cleaner didn’t seem to bother him, but he seemed more interested in it than he had before he was turned on. Daddy soon left for work and it as just Elijah and me. We played with a lot of toys and I made a lot of animal sounds. We also played with the xylophone and some other toys that made sound. He seemed to be stimulated by a piano that lit up when you hit the keys.
We ate some lunch and he finished all of his ravioli. I reinforced the word eat quite a bit. We then played some more and I later put him down for a nap. After he woke up, I put the processor back on Elijah. He didn’t seem to mind much. He was on program two and the volume was set on nine.
I played and talked with him and then we went to the babysitters. I wanted her to become familiar with the processor before he returned the following Monday. He did very well at her house and went off to play with the other kids. They were fascinated by the coil on his head, but only one of them tried to pull it off. They all wanted him to “hear” them and talk to them. I showed Susan, the babysitter, how to run the processor. She really only needs to know how to turn it on and off. She also needed to know how to lock the controls. We talked about naps and taking the processor off. I also explained that he did well while eating and didn’t get food on the coil or microphone.
Jacob was soon dropped off at Susan’s house and then we came home. We soon left and met my mom for dinner and some shopping. Elijah did well at the restaurant and loved the toy store. My mom brought him a toy steering wheel that vibrates and makes noise. We also went to Target to find some onesies. I had located someone online who would sew some pockets in shirts to hold the processor. That darn harness is just too big for him. We came home and played for a while then bathed the kids and put them to bed.
It is still hard to know what Elijah is hearing. He seems to get this strange expression on his face sometimes like he is really thinking hard. I have signed and said “no, no” I know at least a hundred times. I am hoping he makes the connection to the sign and what he hears.
Day 4-- October 27, 2001
Elijah got up on his own this morning. I got him dressed and put his processor on. I actually put the coil and harness on before turning it on. I left the volume on nine just to see how he would do. He acted like he was sitting and waiting after I put the coil on his head. When I turned it on, he winced some and buried his head in my chest. He didn’t cry though and so I waited to see what would happen. I took him into breakfast and he started eating so I left the volume on nine.
I later put his processor on program three on volume five. He didn’t seem to notice the change. We played in the morning and then went shopping. I tried to point out things and sign and voice what we saw. I later changed his volume to seven. He did well until after his nap. He seemed quite irritable so I change the volume to six. I don’t know if it was that or not, but thought it wouldn’t hurt. He likes to make the “mmmmm” sound a lot. He also made an “ayyyy” sound today, but it was not as clear as it should be. Not quite an “ayyy”, but that is the closest vowel sound that it sounded like.
I later took Jacob and Elijah to a school carnival. They both had a great time, but Elijah kept pulling his coil and microphone off. He about drove me nuts. He is so darn independent. He also tried to get away from me several times. He made several protesting sounds at the carnival.
After dinner we went outside to do some walking. We went down to the end of the street and looked at cars, one of his favorite past times. I could not tell if he heard the cars or not. He waved to them though. We came in and tried to play some listening games, but you were too busy trying to get into the box then to pay attention to me. You were also a little tired.
I bathed the kids and put them to bed. Today didn’t seem much different than yesterday. I am hoping he gets a better map on his next visit to the audiologist on October 31st. I do think he is getting sound, he just still doesn’t know what to do with what he hears.
Day 7-- October 30, 2001
Well, I know Elijah has been hearing things by the looks he gets on his face sometimes, but today is the first day I really got him to respond to sound. I knocked on the door at the babysitters and she said that he put his hand by his ear like he heard it. We then came home and had a snack. Later we ate some dinner and then we played. I turned the T.V. off and Jacob was back on the computer so it was just Elijah and I. We played with several different toys and I made all kinds of noises.
I took a plastic bucket and banged it against another toy. He saw me do it and laughed. I did it a few more times and signed “listen”. He then turned his back to me. I banged the bucket again and he laughed. I know he didn’t see me do it. I did this several more times and every time I did it he laughed. I waited until he stopped laughing each time. He would sometimes turn around and look at me while he was laughing. I stopped for a bit, then banged the bucket again. Elijah laughed again and looked at me. One time I did it and I think I even scared him because he jumped a little.
He went into the corner for some different toys and I followed him. There was a musical toy that he grabbed and it didn’t have any lights to give him a visual cue. I hit the button and the music came on. Elijah looked up and bopped his head with the music. I was so excited. I hit the button again and he grinned. He hit the buttons to play the music also. He had shown very little interest in this toy before he was turned on.
Overall this had been a great day.
Day 8-- October 31, 2001
Well we went back to the audiologist today for another mapping. Before we did the mapping, she wanted to test him in the booth. Elijah and I went into the booth with a bowl of grapes. I first had to get him to look at the visual cue that came with the sound. He grasped the concept after that. The audiologist would say “uh oh, Elijah, look this way ba ba ba”. He did finally look over at the speaker and he got his reward with the toy elephant clapping his hands. He grinned!! She did this several more times at different levels. She finally said that he was consistent at 45dB. I was thrilled. When he had been tested back in August with no amplification he had responded at 110 dB only. With his hearing aids he had responded only at 105 dB. Now with his implant he had improved by 60 dB.
The audiologist did decide to raise Elijah’s thresholds. We went back into the other room and she hooked Elijah up to the computer. She raised his thresholds three different times. On the third time Elijah cried, so we knew it was too loud for him. She then took him back down to a more comfortable level. It was an improvement over the previous weeks map though!
We came home to celebrate Halloween. Elijah was Superman and Jacob was a SWAT guy. They both looked great. Elijah did respond to some sounds and laughed when he heard them. Today has been another great day!!
Well, I had done a great job for a week keeping up with Elijah’s progress, but then it went all downhill. HA! What I mean is I didn’t do a good job of keeping a daily journal. I will do my best to summarize.
Elijah did well all month. We went to therapy twice a week. He worked very hard. At home he would turn if I knocked on the wall. The TOD that we see suggested I say his name and then knock. Hopefully, this would teach him his name. We played with all kinds of toys and sounds.
I also had to start learning how to explain the implant to those people who asked, “what is that?” when they would see us. Most people were very nice and thought it was neat.
Looking back now I realize the first two-month (November and December 2001), he was very under stimulated with his implant. He had heard nothing for so long and all of this noise was just a shock for him. I did notice that he turned to more and more sounds at home. He could not localize yet, but he was aware of them. At other times he would be playing and might not notice a sound.
Elijah also started signing “mom” more consistently. He said “momomoma” a lot, but I still was not sure if he knew that that was ME! These first two months we really just made baby steps. He was good at watching faces and watching the therapists. It was slow progress but at least progress.
We did have about three different times we went in for mappings. Each time he seemed to hear more and more. I also started using toupee tape to keep his microphone on, along with the mic lock tubing. It still fell off in the car a lot, so I would just slip the mic and coil off and tuck it behind his back.
Elijah is doing a great job of turning to his name. I would say he turns to his name about 50% of the time. He is also understanding “no no” when it is said. Elijah did give us a scare on New Year’s Eve day though. He fell off of our bed and hit a cedar chest on his implant side of his head. I knew he had not his the implant, because there were scrapes by his ear near the front. A few days later though his implant area swelled, so we went and saw the ENT on January 4th. He looked at it and said it was just some minor swelling and should go down in a day or two, nothing to worry about. The swelling did go down and all was well!!
We went in to see the audiologist on January 12th. We did some more testing in the booth, but of course a 21 month old is not always very cooperative. He did respond to speech at around 35 dB though. We had maxed out all four programs so she kept the most recent program and gave us three new ones to try. She also said we were getting closer and closer to what the NRT said he should be at. We would go back in a month.
After this latest visit he seemed to be “hearing” more. He also turned to speech more at home. He also seemed to be babbling more and more. Therapy continued to go well. He made a lot of vowel sounds and also made /b, m and h/ sounds. He also seemed to laugh more when he heard some sounds. He loved to play the xylophone and seemed to really be trying to listen to all of it.
One other great thing he did was learn what “bye bye” sounded like. We had worked on waving “bye bye” quite a bit. I also said it every time. Well, now I can say “lets go bye bye” and he runs for the door. This is with no visual cues to tip him off that we are leaving.
Elijah seemed to really take off after his last visit to the audiologist this month. He is turning to his name more and more. We tried testing him in the booth, but again he would not cooperate enough to be consistent. We did know he was hearing though. She had kept the most previous map on his processor and added three new programs. It took us a month to go through all three programs.
We continued to work on animal sounds at home. I also pointed out all of the environmental sounds around us. Elijah did start signing “more” when he wanted more to eat. He also started saying alternating syllables.(ex. ba bee)
February was a hard month for us though. He got sick on us around the middle of the month with a bad cold, which turned into RSV. We got that diagnosis on the 25th. David and I took turns staying home with me. Thankfully, he had gotten the Synagis shot to prevent RSV, although it had not prevented it, it had kept him from getting a severe case of RSV. He could have ended up in the hospital.
On March 1st, I was home with Elijah due to the RSV. He was finally feeling much better. We were looking at a book. He saw the picture of a duck and flapped his arm (like a wing, with his hand tucked up in his arm pit). I said, “quack quack” several times. A little while later, I said, “quack quack” again and he flapped his littler arm. HE HAD heard me say it and knew what to do. IT was so great!! He did this consistently all day. NOW you must keep in mind, we had been working on this for forever it seemed like.
He also continued to turn to his name more. He understood “no no” when I voiced it alone. He would stop what he was doing (usually!) and back away. I could say it without him looking at me and he would stop.
On March 10th, he got his first ear infection, in both ears. HE ran a fever all that Sunday, and we got him to the doctor the next day. He got on his medicine and started feeling better. I do think it affected his hearing some though, just because his ears hurt. He also got quieter that week, but then we figured out that he had thrush. Once we got medicine for that he turned right back into a talking machine.
We went to the audiologist on March 18th. Once again, he would not cooperate enough to get consistent results with the hearing test. She did add three new programs though, because we had maxed out his old programs. Since I was on Spring Break that week, I immediately switched him to a new program the next day. I immediately saw a difference that day. He startled when I sneezed. I also startled him yelling down the hallway to my oldest son, Jacob. He also heard the door slam one day, and I swear he can hear the Velcro on his shoes when I separate the two strips.
Elijah also seemed to hear “quack quack” more and more. I said it one day and he ran back to his room and got his duck. He also is turning to his name about 75% of the time. On March 21st, ECI came to the house. The woman said, “do you want more”, and he signed more. I think he heard and understood the word “more”.
He walked around all day on the 22nd saying “buh buh bye, buh buh bye”. My mom kept him on the 23rd for a few hours. He did great with her, but after a while walked around saying “momma, buh bye, momma buh bye” and looking at the door. He was wondering where I was. When I got there he was watching TV and I said his name in a normal voice and he immediately turned. He turns to his name almost instantly. Later that day, we went to Wal-Mart. He took his duck with him. I looked back and saw him holding the duck and looking out the window. I said, “quack quack quack” and he turned and looked in my direction and flapped the duck’s wings. I was shocked he had really heard me.
We do have communication battles sometimes, though. He is a typical two-year-old in that when he wants something he will throw a fit. I have learned to firmly say NO and remove him from the situation, just like I would do with a “hearing” two year old. He only signs “more, mom, eat, sleep” consistently. I do think he is understanding more and more of what is said. I continue to sign a lot of things to him in hopes he will make the connection between the spoken word and the sign.
Therapy continues to go well. There is a new therapist in the group now that sees Elijah. She uses a lot of different things to get him talking. This has helped. It is all so hard to explain on paper!
Overall, we are very pleased with his progress. It seems slow, but he has made great strides. I am curious to see what the TOD thinks of him when she sees him on the 5th of April.