My son Micah is profoundly deaf. We don't know exactly how or why he lost his hearing; it is likely that he was born hearing impaired. By the time he was 20 months old he was wearing digital hearing aids in both ears and attending an intensive speech therapy course.
Micah is very bright and, thank God, has no physical or cognitive problems other than his hearing impairment. He made good progress with his hearing aids for a couple of years. Then, in 2003, his steady progress seemed to stall.
My wife and I were faced with a series of difficult alternative strategies to consider, each of which would indelibly impact Micah's life on many levels. Although it was not easy, after weighing all the options and tallying up all the pros and cons, we concluded that the best outcome for Micah depended on his receiving a cochlear implant.
On September 16, 2003, Micah, then four years old, received his implant. It is a decision we have not regretted for one moment! Micah's progress since his implant was activated is nothing short of phenomenal. Our journey with Micah through all of this has been enlightening, challenging, and rewarding.
The web is filled with the testimonials of parents who have tread the same path we have taken. My wife and I found them to be very encouraging as we were making decisions on behalf of Micah. This page is my contribution to that corpus. I hope it is equally helpful to someone.
Note that three of the photographs on this webpage—the one appended to this introductory section, the one appended to the 11Jan2004 entry, and the one following the 29June2004 entry—were shot by Michael Mauney for use in the 2006 Annual Report of the Duke Endowment. These photos are used with Mr. Mauney's kind permission.
The following entries are taken from my blog. They chronicle Micah's implant journey from my point of view, beginning the summer before the surgery and ending the following summer.
30 june 2003: Catchup... Micah, we found out last week, is now in line to be evaluated for a cochlear implant. Even with his state-of-the-art (mighty expensive, not-covered-by-insurance) digital hearing aids, he is not getting enough sound input in the upper frequencies. Unfortunately, /s/ and other important phonemes reside up there and English doesn't really work well without /s/. So, all the members of Micah's caregiving team—speech pathologists, otolaryngologists, audiologists, parents—now agree that he should be evaluated for the implant. It's a lot for a 4-year-old to undergo, especially when you can't explain to him what's about to happen, why his head is being shaved and cut open, etc. Plus, it's a very invasive procedure and a step that cannot be undone once taken. I had been hoping we could avoid this decision point, but it seems we will have to make a choice in the next couple months. ...
21 july 2003: Direction for my LJMicah is scheduled for cochlear implant surgery on September 16. This has been the most difficult decision Shell and I have had to make as parents. It has been an emotionally wrenching process—Micah stands to benefit greatly from the implant, but he will undergo tremendous pain and confusion and we will not be able to explain this to him ahead of time. I am not looking forward to the recovery period.
For the time being, I've decided to use my LJ as a forum to record our progress through this experience.
But first, some background . . .
Micah suffers from bilateral, sensorineural hearing loss. In plain English, that means that Micah's loss affects both ears and the source of his trouble is in his cochlea, the organ of the inner ear that stimulates the auditory nerve (as opposed to a conductive hearing loss that would be a mechanical problem of the bones and structures of the middle ear). Micah's hearing loss is in the severe-to-profound range. Without his hearing aids, he might hear a train as it rushed by, but only if he was standing very close to the track.
Micah has been in intensive speech therapy ever since he got his hearing aids at 20 months of age. We have used the Auditory-Verbal method and Micah has made great progress. Lately, however, he seems to have hit a plateau.
It seems that, despite the power of Micah's hearing aids, he is not getting enough sound in the upper frequencies. These sounds are vital to speaking and understanding English. Because of this, Micah has been approved for the cochlear implant.
Cochlear implants affect hearing in a completely different way than hearing aids. Hearing aids amplify sound and focus it down the ear canal. A cochlear implant stimulates the auditory nerve directly, completely bypassing the outer and middle ear mechanisms.
This journal will be a forum for me to record our family's experience through Micah's implantation, recovery, activation, and therapy. Hopefully, someday Micah will be able to read this journal and compare his perspective to mine.
23 july 2003: Moving ForwardToday I received Micah's schedule in preparation for the CI surgery. He will have two more audiology visits in August, two pre-op visits in early September, surgery on September 16, activation of the implant in mid-October, two follow-up visits to program and fine-tune the implant in November, and two additional fine-tuning visits in December and January.
On top of that, Micah's speech therapy will increase from two days per week to four days per week in August. He'll take two weeks off for the surgery and recovery.
I'd say that's a fairly full schedule. I hope the other 5 children don't want to do anything between now and 2004.
24 july 2003: The Coloring BookI received a package from Cochlear Corporation today. Cochlear is the company that makes the Nucleus 24 Contour device with which Micah will be implanted. They sent us several copies of a coloring book designed to explain the surgery to children, some videotapes, and a book for parents of implantees. Very generous. Of course, we're getting ready to spend about $40k with them (or, rather, our insurance company is), so they can afford to be generous.
The main thing we wanted was the coloring book. I am scouring the internet for strategies on how to explain some of this to Micah ahead of time, to help him anticipate some of the discomfort and pain and forestall some of the confusion. That's a tall order for a child with a vocabulary as limited as Micah's. So far, this coloring book is the best suggestion I've received.
I'm not sure what I expected, but the coloring book turns out to be more of a pamphlet with some smallish black-and-white line illustrations. I'm a little disappointed. This will not solve all of my problems with respect to preparing Micah.
We've been down the road of springing a medical procedure on Micah unawares once before (albeit on a much smaller scale). The results were not pleasant, for him or for us. I'm not anxious to repeat that episode.
31 july 2003: Coloring Book—reduxThe Cochlear Corp. coloring book turns out to be more useful than I previously thought. Micah and I have been through it a couple of times and he really seems to understand it. Moreover, he enjoys it. When we get to the page that shows the audiologist testing the main character's hearing with her new CI, Micah makes the "beeps" and "boops", mimicking his speech therapists' testing of his classmates' CIs.
Last night, he picked up the coloring book and tried to "read" it to Asa. Poor Asa was taking a nap at the time and didn't enjoy his older brother pointing out the finer points of the CI process to him.
I've recently had a very illuminating exchange with a deaf-blind woman from California on a CI-related email group. Felicity is being implanted next week and her daughter was implanted several years ago. She is a veritable evangelist for CI! It is very encouraging to read her thoughts and experiences.
14 august 2003: AwarenessRecently, Micah's hearing aids have been squealing and beeping incessantly. This feedback happens from time to time when his ears outgrow his earmolds (the piece of the hearing aid that fits into the ear canal and channels the amplified sound).
Today, Shell took Micah to UNC Hospital to visit his audiologist and have new earmolds made. While they were there, they ran into Dr. B, the surgeon who will be performing Micah's CI surgery, in the waiting area.
Now, Micah has only met Dr. B once, but when he saw him, he became very excited and said, "Micah, ear!! Micah, ear!!" and made a motion like he was attaching a magnetic transmitting coil to his head behind his ear. He also pretended like he was clipping on a belt clip speech processor.
Shell said he was quite miffed when they left without getting him implanted right then and there.
And here I was worried he wouldn't understand the process. Plainly, he's more aware than I thought.
16 august 2003: Thirty days and countingOne month from today Micah will receive his implant! Two months from yesterday, the implant will be turned on. This is a sequence of events that will dramatically change Micah's life. It is amazing and exciting and, I must admit, a little nervewracking.
On Friday we had an appointment at the Carolina Children's Communicative Disorder Program for more diagnostic testing. This is part of the routine battery of tests that CI candidates must endure.
Micah is participating in a three-year study that NIH is conducting on pediatric CIs and during this appointment he had his first of several videotaped sessions. Micah will be taped in a variety of situations every six months throughout the study and his progress will be noted. Because Micah does not suffer from any cognitive or other disorders (unlike many other severely-to-profoundly deafened children), the data on his reaction to the CI will be very valuable as they will not be "cluttered" with other symptoms; they will document a "pure" hearing loss reaction.
We received very welcome news that the diagnostic testing indicates a very good prognosis for Micah. He has all of the indicators for a very good outcome with a CI. Thank God for UNC Hospital's neurosciences department and its affiliated organizations (CCCDP, CASTLE).
The tests were not only of Micah's progress and aptitudes, but also of my and Shell's attitudes and perceptions. I think these tests are designed to help identify parents who likely won't put in the work necessary to realize the CI's incredible potential.
As normal for standardized tests of this type, I tended to over-analyze the questions. A question like "Do you regret the extra time you have to spend working with your hearing-impaired child?" was one that almost stumped me. Of course I regret it in the sense that I wish he was not impaired and, accordingly, that such extra time would not be necessary. Just as surely, given the context we find ourselves in, I wouldn't do anything less than everything possible to provide Micah with the best chance for understanding and acquiring speech. In that sense, I most certainly don't regret such time investment; rather, I am overjoyed to have the opportunity and means to make such investment.
Because of our progress in this appointment, the final pre-op diagnostic appointment was cancelled.
School at CASTLE starts for Micah again next week. After that we will bide our time until the second week in September when he has his medical pre-op appointment at the hospital.
28 august 2003: untitledToday should have been Micah's final evaluation at CCCDP. Because we have been fast-tracked and made so much progress in the earlier visits, today's eval was cancelled.
Next stop: surgical pre-op on Sept. 8!
Today, Asa (2 yrs. old) came up with a new word: "now," as in "Daddy, come and see now." It is fascinating to watch Asa's vocabulary grow spontaneously and automatically. It seems like each day a new word or two creeps into his usage. Micah's vocabulary, on the other hand, grows only with conscious drilling, demonstrating, and coaxing. The contrast is really remarkable. It has highlited the wonder of Asa's development for me. I don't think I really appreciated the miracle that was taking place right before my eyes as the three older children acquired speech. ...
8 september 2003: Pre-op VisitToday was Micah's pre-op visit, the final formal step before surgery. Last week we received confirmation from the insurance company that they had approved the procedure. So, full steam ahead.
Today's visit was a marathon. We arrived at UNC Hospital at about 1:15 p.m. and were finally making our way home at about 6:00 p.m. Shell picked Micah up from school and brought him over to Chapel Hill. I met them there from work.
Our first stop was the Neurosciences department. During the eternal wait, we saw Dr. D (Micah's non-surgical ENT) and Pat R. (Micah's audiologist) and had a nice conversation with both. Finally, a resident saw us and took Micah's vitals and enquired about his general health. He then asked whether Micah could hear okay with his hearing aids. That question seemed sort of odd to me—he can hear, but if he could hear adequately we wouldn't be preparing for a cochlear implant. But he seemed like a very nice guy and went out of his way to make Micah feel comfortable.
Our next visit was with Dr. B, the surgeon who will perform the procedure. He quizzed us on which ear and which device, testing us to make sure we knew what we were doing. He also went over the procedure again in detail. Micah will (thankfully) be asleep before the major prepping begins. He will have a very small patch of hair shaved. Because he is so young, the hollow that will be bored into his mastoid bone to house the receiver will probably extend all the way to his dura, the fibrous tissue that covers the brain.
Micah will have to wear a very tight pressure bandage for five days. If everything goes well, we will be able to remove it on Sunday morning, which is great because that afternoon Joshua will be baptized. It will be nice for him to not have to wear the bandage for all the pictures, etc.
We then went to pre-care. Micah had to have some blood drawn and an EKG. Incomprehensibly, they drew the blood first, which made him madder than a hornet. They gave him a very nice stuffed bear with a UNC T-shirt on it, which he liked very much, but didn't really calm him down any. I am sure the EKG results will be skewed.
Finally, after receiving all the instructions about when and what he can eat and drink on Monday night/Tuesday morning, we were permitted to leave.
Micah spent the evening showing off his wounded arm where the blood was drawn and putting his new bear to bed. Right now, the bear is sleeping in Joshua's crib. I'm not sure where he will end up.
9 september 2003: One week to go �We are down to the wire. One week to go before surgery. I have to remember to ask Fr. N to give Micah Holy Unction on Sunday.
Father's going to come to the hospital with us, as well. It should be quite a group. CASTLE is closing for the day because they have two students getting implanted on the 16th (Micah and one other). The teachers and therapists all want to be there for the surgery so they cancelled classes for the day. It will be comforting to have them there.
The procedure will take about three hours.
For Micah's convalescence I have purchased the entire three-season collection of Mr. Bean on DVD. Micah will be even more hearing impaired than usual until his implant is turned on, being reduced to a single hearing aid. Mr. Bean is perfect for him to watch because there is so little dialogue and so much visual humor. Micah loves Rowan Atkinson's hilarious facial expressions and physical humor. He howls with laughter when we watch Bean. Tom and Jerry is another favorite for the same reason.
14 september 2003: Final StretchThirty-six or so hours to go. We won't know for sure what time the surgery will start until tomorrow evening. They have a hierarchy of order for the OR and just where Micah will fit in the schedule is anyone's guess.
After liturgy this morning, Fr. Nicholas gave Micah Holy Unction. Keeping him healthy is very important right now. If he shows up with a cold on Tuesday, they will not let him be anesthetized and we will have to reschedule. I'm not sure our nerves could deal with that. Noah is a bit stuffed up right now, so we are trying to keep him away from Micah at all costs.
15 september 2003: The ScheduleWe received our scheduling call this afternoon. Micah has to check in to UNC Hospital at 7:45 a.m. tomorrow.
My parents-in-law and brother-in-law arrived this evening to help us with childcare issues. Patsey will come with us to the hospital to help us with Joshua. Ed and Troy will stay at home to ferry Emma to and from school and make sure Sueanna, Noah, and Asa don't kill each other or break things.
Noah has gotten very "big brother" about all this. He worked very hard all afternoon to draw a picture of a snake to give to Micah when he comes home from the hospital. He had to sneak away to draw when Micah wasn't looking so as not to ruin the surprise. Snakes are one of Micah's favorite things and Noah colored it green (Micah's favorite color) with red diamonds on its back.
Noah also made sure that Shell and I knew that we should ask for a warm blanket for Micah to cover up with as he's coming out from under the anesthesia. He remembers the disorientation of waking up from when he had his PT tube procedure and the warm blanket made him much more comfortable.
Micah is sleeping now -- his last night pre-implant. He is in our bed, just a couple of feet away from the computer. For some reason I find this all very ... poignant. His whole world changes tomorrow. Thank God for such an opportunity.
16 september 2003: SURGERY DAYWhat a day! This morning Micah's left ear was implanted with Cochlear Corp.'s Nucleus 24 Contour cochlear implant system. We are exhausted, excited, and extremely thankful for how smoothly everything went.
The morning got off to a rocky start. We were supposed to leave between 6:45 and 7:00 a.m. to make sure we made our 7:45 a.m. check-in. Of course, sleeping was not something that came easy last night so when my alarm went off I drowsily hit snooze and mumbled to Shell that it was 5:30 and she should get up. Then I looked at the clock again and noticed that 5:30 looked an awful lot like 6:20. Needless to say, our schedule was quickly adjusted and with a little violation of the speed limit we were able to get to the hospital only 15 minutes late.
I dropped Shell and Micah at the door and went to park. By the time I got to the Pediatrics Procedures area, Micah was already dressed in the hospital pajamas and socks and not very excited about all the attention he was garnering. In addition to me, Shell, Joshua, and Patsey (Shell's mom), all of Micah's speech therapists from CASTLE and one of the audiologists from CCCDP were there to observe the procedure. Micah's primary audiologist from UNC neurosciences also poked her head in to check on us.
I held Micah while he was given some very red liquid that had a very psychedelic effect. Micah became very relaxed and cheery. At one point he was giggling and trying to catch the butterflies that were etched into the wallpaper, but that apparently seemed to him to be flying around the room.
Shell and I spoke briefly with Dr. B, the surgeon, before the procedure. He re-confirmed which ear was targeted and had us write "yes" on that side of Micah's face with a marker.
The anesthesiologist soon came with a large red wagon to wheel Micah into the OR. I was given a gown and mask and allowed to come in until he was fast asleep. Fr. N got there just as we were headed out the door and was able to quickly give Micah a blessing.
In the OR, Micah was given some gas (nitrous oxide?) and within a few minutes was fast asleep. It was after he fell asleep that his IV and breathing tube were put in. Dr. B told me not to worry and a nurse escorted me back to the waiting room.
The waiting room was crowded and the TV was blaring Dr. Phil, so we grabbed one of the pagers the hospital makes available and made our way to the cafe. None of us had had anything to eat, yet, and I was in dire need of caffeine.
We sat chatting with Fr. Nicholas, sipping coffee, and nibbling snacks for some time. After a while Sarah M. happened to show up. She is a graduate student at UNC and had a class in a building close by and dropped by for moral support.
We hadn't been back in the waiting room for more than 15 minutes when I spotted Dr. B out in the corridor. He motioned for us to come out and speak with him. He told us that everything went just perfectly, the device was in and seemed to be working fine, and Micah was sleeping off the anesthesia! We were very excited. The whole procedure had taken a little over 2 hours.
Soon, I was asked to come back to the recovery area to be present when Micah started to come around. Without his hearing aids he cannot hear a thing and they needed a familiar face to help ease him back to the land of the living.
Micah was laying very still and asleep on a gurney. He had a huge bandage tied very tightly to the left side of his head. He had more wires and cables attached to him than the back of my television. As he started to come out of the anesthesia, he was very disoriented and angry. The breathing tube had made his throat very hoarse and painful.
He could only croak and try to claw at the bandage on his head. He was also not too happy with the IV in his hand.
With the nurse's help I was able to restrain him from doing too much damage. They finally gave him a little dose of something to let him sleep for a few more minutes while the disorienting effects of the anesthesia wore off. I held him for the next 20 or so minutes and watched his vitals on the monitor slowly tick up.
Finally, I convinced the nurse that we could take the EKG leads off and disconnect the IV. That and a cool washcloth on his face helped waken him a little. He was still not happy, but seemed to understand that he couldn't rip the bandage off his head. He was crying a little and croaking "My ear, my ear."
I carried him from the recovery area to another recovery area where Shell could come in (the first area was restricted to only one family member). She came in and he had to try to hoarsley tell her of all the indignities he was suffering. Mainly, he wanted out of that hospital and out of their pajamas and away from their nurses!
We put his hearing aid in his right ear which helped quite a bit. He managed to sip some apple juice and when we put him in his own clothes, he calmed down quite a bit. He asked over and over to go home. He had had his fill of the hospital.
The poor nurses were beside themselves. They were concerned that he was in pain, but I truly believe he was just irritated and mad. We gave him a little Tylenol for the ride home and, voila, we were released! We didn't have to use a wheelchair or anything; I was able to just carry him out.
As soon as we hit the elevator, Micah's mood took a turn for the better. I think he was just tired, groggy, and glad to be out of there. He soon fell asleep in the car and was very peaceful all the way home. We were home by late afternoon.
Once home, he slept for a couple more hours. When he woke up he was still a bit disoriented and cried for a while. We got him to drink some juice and eat a little bit. We put on his new Ice Age DVD and he was very quickly much happier with the world. On one trip to the bathroom (I've been carrying him around the house so he doesn't have to walk), he caught a glimpse of himself in the mirror. He was mightily impressed with the size of the bandage.
At about 7:00 p.m. he said he was hungry and asked for pizza (not just any pizza, Errico's pizza). His wish was my command. He ate two pieces and then wanted to play cards with his brother and sister.
So, it seems like he's doing just fine. We haven't had to give him the strong pain medication. He seems to have accepted that he will have this bandage on his head for the time being. I suppose as long as the DVDs don't run out we'll be fine.
17 september 2003: First Day Out
Well, he's a little sore and still not quite completely steady on his feet, but Micah is doing quite well on his first post-op day.
We've been dosing him with Tylenol for the pain (so far he hasn't needed the stuff laced with codeine). His neck is quite sore and he still croaks a bit from the intubation. The pressure bandage keeps slipping down, which causes him a little pain. But, so far so good.
Last night was the second largely sleepless night in a row for me. Micah wanted to sleep, but didn't want to lay down. So I sat up and held him for several hours, until he was asleep enough to lay him in the bed beside me.
He walked around a little more on his own today. My office sent him flowers and balloons, which he loved very much. He took a three-hour nap this afternoon. Again, he didn't want to lay down. This time, Shell held him until he was fast asleep and then laid him on the couch.
He recieved a stuffed bear from Cochlear Corp., the maker of his device, complete with its own external implant system that velcros on its head. Micah played with it several times today, pushing the buttons on the speech processor and pretending to test the bear's hearing. After a while he asked me to put a bandage on the bear's head, like his bandage. I did and he loves it.
Right now he is in the other room watching "Hello Dolly" with his older siblings. He just came in to tell me that the folks on TV were dancing. So long as he doesn't try to mimic them ...
22 september 2003: The bandage is off ...� We removed the pressure bandage from Micah's head on Sunday morning. At first, he did not want us to take it off. He had grown very accustomed to it and I think he knew that it kept his incision protected from jostling. Finally, albeit reluctantly, he agreed that we should cut it off.
I held him while Shell manned the scissors. There was a moderate amount of dried blood in the bandage and his hair right around the incision, but no seeping (Yay!) or any other indication of infection.
Of course, once the bandage was off his ear, he immediately wanted his other hearing aid in. He was very upset when we said no, but he soon got the picture and went on with life. He seems to now understand that he won't be wearing the other hearing aid.
At church -- his first real foray into the world since the surgery -- he initially wanted to be held and wouldn't let me put him down. We were able to get him interested in his Church School class, however, and soon he was coloring with the rest of his classmates.
He enjoyed the attention he received from all the folks who have been following his progress. He also delighted in showing off his incision to anyone who wanted to see. He affected a Vanna White type motion in presenting the side of his head to interested folks.
Speaking of the incision, it runs along the back of the stem of his outer ear, where the ear connects to the head, from the bottom to the top. At the top of the ear it runs up and a little back for about 2 inches. It is sutured and there is surgical tape over the sutures. There is a little bruising around the base of his ear and plenty of dried blood. We will return to the surgeon on Thursday for removal of the tape.
25 september 2003: Post-op VisitMicah had his first post-op checkup this morning. When we pulled into the hospital campus, he began to cry and hold his right (non-implanted) ear saying, "No ear! No ear!" I think he thought we were going to have the other ear implanted.
I consoled him as best I could and tried to explain that we were only there to let Dr. B take a look at the other ear. But he was not happy about it. He was still crying when we checked in at the Neurosciences Clinic. He became much happier when Shell and Joshua arrived after dropping off the other kids.
As we were waiting for Dr. B, we ran into several of the audiologists that we know, including Pat R., Micah's primary audiologist. These are the folks that helped us get through the very tough first few weeks of Micah's diagnosis and they have been a tremendous help to us ever since. They were so excited to see Micah up and running.
He was very pleased to show off his incision yet again and by the time we got into the exam room, he was quite happy and jovial.
Then Dr. B came in and proceeded to remove the surgical tape from the incision -- in one swift, ripping motion. That confirmed Micah's deepest fears that we had delivered him up to his doom and he howled and howled. Even Dr. B's offering of stickers could not restore Micah's good mood. He wouldn't even take them.
The incision looks just great! It is neat and healing quite nicely. The sutures are all below the skin and will eventually dissolve. The tape held the incision closed until it could begin to heal. Now that the tape is gone, we are cleared to wash his hair and get all the remaining dried blood out of there (there's a large pool of it caking his hair).
If I can get him to hold still for it, I will post some pics of the incision.
Next stop � activation of the implant on Oct. 15!
26 september 2003: A Couple of Pics
He looks peaceful, doesn't he?
Micah was not too keen on having his incision cleaned, poked, or prodded. So I had to wait until he fell asleep to take these. Plainly, I need more practice with the autofocus on our digital camera.
Before the tape was removed.
The incision: a little closer.
14 october 2003: Activation!!Wow! The big day! One we've been waiting for for more than three years! Micah is now wired for sound!
I wasn't quite sure how he would react. He can be quite funny about new things. I was prepared for crying, wailing, and gnashing of the teeth. But, thankfully, none of that happened.
Each of the 22 electrodes Micah now has implanted in his cochlea had to be tested individually. Once all the external hardware was put on, Holly, Micah's audiologist, sent a pure tone through the implant on the lowest frequency. Micah was oblivious to all of our anticipation as he sat putting a puzzle together with his speech therapist. Holly slowly increased the volume and we all held our breath.
All of a sudden, Micah sat up ramrod straight and his hand went to his implanted ear. His eyes were as big as saucers. "Oooooh!" he said, "I hear my ear!"
This was the first time he'd heard anything through that ear in the month since the surgery. It was the first time ever hearing sound like that.
Each of the other electrodes were tested in turn. Each time, Micah's excitement and surprise increased. Each time he reacted to the sound, all of the adults in the room burst into cheers. It was quite exciting.
Finally, after all 22 channels had been tested and levels mapped into Micah's speech processor, his microphone was turned on so that the sounds from the room were being transmitted through his implant. Wow! He wouldn't shut up! He kept babbling and babbling, fascinated by the sound of his own voice that he was hearing in a completely different and new way.
Holly slowly increased the volume and with each click, Micah's babbling became more animated. I don't think I've ever seen him happier. We finally realized what he was babbling over and over: "oo," "ah," "ee," "sh," "mm," "ss"�the Ling 6 sounds, the sound pattern speech therapists use to test a child's hearing to make sure his cochlear implant is working.
It was quite a full morning, better than I expected or even hoped. It will take some months for Micah to adapt to his implant and catch up to where he was with his hearing aids before the surgery, but he will soon surpass that level and begin to move more rapidly forward.
More updates will be coming.
10 november 2003: 2nd Post-op VisitMicah had his second post-op visit with the surgeon last Thursday. I was in Canada on business and had to miss it. :-(
Dr. B said things looked just fine. The ear is perfect and the only thing wrong with the incision site is that Micah's hair seems to be slow in returning.
Since Micah's re-map a couple weeks ago, we have been slowly progressing him through the four newly programmed levels his CI provides. For some reason, he doesn't like level 3. He told Shell that it "hurts" (his standard complaint for anything that he's not loving at the moment). Level 2 is fine, but level 3 with any volume at all prompts this reaction.
Dr. B didn't think there was anything going wrong with the internal stuff; rather, like so much in this life, it's a software thing.
13 november 2003: A CI Moment... CI moment: At church on Sunday morning, Micah surprised us by singing along during chanting of the Beatitudes during liturgy. He also sang along during the pre-communion hymn at last night's liturgy for St. John Chrysostom. WOW! This is brand new ground for him to plow and he's loud and clumsy at it, singing about 1/2 second behind everyone else as he strains to hear the syllables, but I don't think I've ever heard a more beautiful sound. I know it's probably distracting to folks who stand around us, especially if they don't know all the details, but it is very hard for me to bring myself to "shush" him.
24 november 2003: First Post-op AudiogramToday is a very good day! Micah's first audiogram with the CI went amazingly well. He hit 30 dB across the spectrum, except for 3,000 and 4,000 Hz where he clocked in at 35 dB. RIGHT ON TARGET! He also detected spoken language at 15 dB. Pretty good for a kid who can't hear.
So all this means that his mapping is just about right, all the internal magic is working perfectly, and his brain is making sense of all the new stuff being thrown at it.
To top it all off, he sang again at liturgy yesterday (this time, it was the Cherubimic Hymn that inspired him).
It is wonderful to get such tremendously positive feedback. Things are going better than I had hoped.
This is a great week for Thanksgiving.
30 november 2003: Thanksgiving Wrap-upWhat a wonderful holiday! We did not travel a bit and that was quite nice. The break from work was also quite nice.
We have spent the extended weekend playing lots of family ping pong in our garage. I whupped up on my four older children (there were a few moments where the outcome was in doubt, but my overwhelming serve saved the day) and emerged with the title.
The children of our parish have been practicing a hymn to St. Nicholas that they will sing at the liturgy on St. Nicholas' feastday next Saturday (Dec. 6). All of my children have been singing this hymn at every turn. "Oh who loves/Nicholas the Saintly ..." Micah loves this song, though his version is more like "Oh oo uubs/Ni-no-na ne naitny."
Plainly, he has a problem getting his palate around some consonants, but this would have been impossible pre-CI. It's amazing to see these developments right before our eyes.
He continues to sing at liturgy. (YAY!) This morning it was the communion hymns. Very loudly.
5 january 2004: Holiday Wrap-upWhat a wonderful spate of holidays we have had (and will continue to have tomorrow with Holy Theophany)! We had wonderful visits from many folks we love, although most were too brief.
Over the Christmas break, Micah benefitted greatly from a couple weeks of intense conversation with his siblings, especially Asa, as we spent most of time together as a family. Although Asa is three years younger than Micah, his command of spoken English is much greater than Micah's and Micah is picking up good tips from his little brother.
For his school's Christmas program, Micah recited "Jack be Nimble." His rendition included a choreographed jump over a cardboard candlestick and a pretended burning of his behind. It was a searing performance. He may have a future in drama.
Micah seems to be grasping the whole spoken language thing much better now. He is finding it easier to communicate. On Saturday night after Vespers, he told our priest, "Chri'ma' chree -- hhhooommmme [carefully getting the aspirate /h/ and the /m/ in there] -- bye-bye," explaining that our Christmas tree at home had been taken down, while the one in the narthex of the Church was still there. All of this without any pantomiming!
11 january 2004: Random CI MomentThis evening, as we were getting dinner ready, Micah came over and grabbed me by the hand, tugging me away from the kitchen. "Da'," he said, "'ome 'ere." Actually, the 'ome and 'ere had a little vestigial /k/ and /h/, respectively. It was a good attempt so I followed dutifully.
Micah brought me to the living room, over to our piano. I'm a little thick, so it took me a minute to decipher his gestures and words enough to figure out that he wanted me to sit at the piano and play for him. He pulled the stool out for me and pushed the cover off the keyboard, but he's never asked me to play the piano for him before. What he must think of my command of the English language ... :-o
At any rate, I started banging out REO Speedwagon's "Can't Fight This Feeling" (I am, after all, a child of the '80s). Apparently, the feeling Micah couldn't fight had been an urge to perform because he started belting out some song at or near the top of his lungs in a very dramatic fashion. As his siblings popped their heads into the room to see what in the world was going on, he motioned for them to take a seat on the couch and enjoy the show.
And what a show it was. Three numbers. All at full voice. He warbled, he crooned, he took several bows to the applause of the audience. We finally had to stop because the pianist's repertoire was exhausted.
Heartwarming! Three months ago, this would not have happened.
Tomorrow, Micah has his third post-op audiogram. I'm looking forward to continued good news.
12 january 2004: 3rd Post-op AudiogramToday Micah sat for his third post-operative audiogram. His levels had slipped a bit from the last audio. Before re-mapping he was in the 40 dB range, about a 10 dB loss from his prior audiogram. I had hoped that he had stabilized to the point that there wouldn't be such slippage. He's not there yet, but is headed in that direction.
After re-mapping he was hearing in the 20-to-30 dB range across the frequency spectrum. His speech awareness threshhold (the softest level at which he detected, but not necessarily understood, speech) was 15 dB.
This is all very good news! He is still getting used to his implant. Every day he seems to get better and better at using it.
He seems to really enjoy the audiogram testing, which is nice for his audiologists. The better he gets at the testing, the more accurate his mapping will be.
19 january 2004: CI MomentLast night as we were finishing our dinner of leftover Chinese takeout, Micah said, "Dad, I /vinshi/." That one had me perplexed.
Finally, after about three tries, we realized that he was "finished." Wow! Our usual exchange at the end of a meal goes like this:
Micah: "Dad, can I get (d)own?"
Me: "Are you done?"
Micah: "All (d)one."
Then Shell will echo, "You're all finished!" to reinforce an alternative usage.
This time, he shortcircuited the script and jumped right to the alternative word. That type of on-the-fly appropriate word substitution is really exciting! This is the first time we have seen Micah do this so it is a real step forward.
His vocabulary is steadily increasing. His pronunciation is getting better. Pronouns are (finally) seeming to make sense to him. And the singing ... well, let's just say he's quite serious about his art.
22 january 2004: untitledIt was a tough day for Micah. He started the morning out of sorts and decided that today might not be a good day to go to school -- he wanted to stay home with Mom. Who among us hasn't felt that way at one time or another?
Being dutiful parents we, of course, ignored his pleas and off to school we went. He wasn't happy, but I managed to pry him halfway out of his funk by playing the music loud on the 30-minute drive to Durham. All that was for naught, however, because as Micah got out of the car in the school parking lot, he walked right into the mirror on the car door. He took a pretty hard blow to his left cheek.
So, I had to leave him at school crying (him, not me) and out of sorts.
Then, to top it all off, I had to pick him up this afternoon and take him for his Pneumovax vaccination. Apparently, kids with cochlear implants have an increased risk of getting bacterial meningitis (specifically, pneumoccocal meningitis) than kids without CIs. This vaccine protects against the bug that can cause the meningitis. Micah HATES shots.
Unfortunately, the vaccine is rarely given and most pediatricians don't stock it. We had to go to the Wake County Health Department. The good thing was that it didn't cost me a penny. The bad thing was that the staff were ... well, not as attentive to Micah's particular needs and idiosyncracies as the friendly surgical staff at UNC Hospital with whom he is used to dealing. In short, the UNC folks coddle him; the county health folks don't.
The attending nurse did very nicely show me how to clamp Micah's legs still between my legs and hold his arms in a viselike grip while she prepared the injection and shot him up. Actually, it wasn't very nice at all. She could have at least hidden the needle.
At any rate, once the band-aid was on and I scooted him out the door (screaming at the top of his lungs) things were looking up. Once in the car, I opened up the Pokemon DVD I had gotten him as sort of a consolation prize. He smiled through his tears and urged me to get him home so he could watch it.
Thankfully, it will be five years before we have to go through that again.
5 february 2004: Pronouns All AroundMicah's habilitation continues apace. Today, pronouns suddenly seemed to make sense.
"I want salt." "Asa, help me."
A very exciting step! It may seem like a small thing, but pronouns are the lubricant that keeps the English engine running smoothly (I know, I know: many would argue that prepositions are the lubricant that keeps the English language running smoothly -- at least Modern English -- but that's a debate for another day).
The folks at CASTLE are truly wonderworkers.
2 march 2004: CI UpdateIt's been a little over 4 months since Micah's cochlear implant was activated (a little over 5 months since the surgery). Micah's brain has been slowly adapting to the device, making more and more sense out of the new data that is being delivered to his auditory nerve. The digital array that is implanted in Micah's cochlea delivers 22 discrete channels of sound, whereas a healthy cochlea has about 40,000 channels; however, over time, the brain "fills in the gaps" and sound becomes more and more meaningful.
The latest exciting development has been the blossoming of Micah's vocabulary! In the past couple weeks, he has surprised us with spontaneous and appropriate words here and there. Yesterday, Lillian, Micah's speech therapist, introduced five new vocabulary words for him to work on. She had to immediately get rid of three of them because he already knew them and was able to demonstrate proper usage!! He is beginning to pick up language the way hearing kids do -- through environmental osmosis, just being immersed in a speaking world, rather than being drilled on words and pictures.
Micah's six-month re-MAP is scheduled for April 1.
1 april 2004: Six Month AudioIt has been almost six months since Micah received his cochlear implant. Today, we sat for his six-month audiogram and re-mapping of his CI.
He continues to do incredibly well! His levels were very consistent with much less variation than the last re-map. This means that his auditory nerve is stabilizing and not continuing to develop resistance to the electical stimulation coming through the implant.
I was amazed at how softly he could hear the tones. The first pitch was very high and almost whisper-soft. Micah made a tiny, pinching measurement with his fingers and said, "That's a little one." Micah's audiologist, Nancy, who has two CIs, thought that was very funny.
Nancy was also very pleased with the blossoming of Micah's vocabulary. We still have work to do on fluency and sentence construction, but his word knowledge is going better than expected. He works very hard on pronounciation, as well.
So, this was a very good report! They made some minor tweaks to his threshhold levels and gave him a little more headroom, but other than that there was nothing dramatic.
20 april 2004: Somber Day—Part IToday was Micah's first audiogram on his right ear (the ear without the cochlear implant) in a year. It was not a very pleasant experience.
As we pulled into the UNC Hospital complex Micah began to wail, "They hurt me! They hurt me!" I think he is still traumatized by the whole Pneumovax episode. I calmed him down as best I could, telling him we were only there to "listen" -- his term for an audiogram -- and that nothing was going to hurt him, praying that this was true.
The results of the audio were sobering and unexpected. Micah has suffered a dramatic loss of hearing in his right ear over the past year. Whereas before he was hearing (unaided) in the 70-90 dB range, now he hears in the 85-90 dB range at the lower end of the frequency spectrum and his hearing curve quickly drops below the 110+ dB range. At 4,000 Hz he had no response at all at any level.
His hearing loss is no longer severe-to-profound; it is now simply profound. This was not a threshhold we wanted to cross. I know he is doing very well with the cochlear implant, but for some reason I felt a great sense of loss as Micah failed again and again, frequency after frequency, to respond to the tremendous amounts of sound pouring down his ear canal.
We also tested Micah's implanted ear. Most of the times all residual hearing is lost in an implanted ear due to the trauma to the cochlea during the implant procedure, but sometimes by some quirk of fate the hearing remains. Micah followed the statistics on this one: as expected, he has no residual hearing at any frequency at any level in his left ear.
Pat, Micah's excellent audiologist, reprogrammed his digital hearing aid to wring out every last drop of sound possible into his right ear. She had no explanation for the continued deterioration of Micah's residual hearing, however. It is baffling.
The silver lining is that this development confirms that we made the right decision with respect to getting the implant. Micah would never be able to get enough sound with hearing aids to learn to speak at his current level of hearing.
17 june 2004: Micah's VocabularyMicah's vocabulary is growing by leaps and bounds, and not just because a list of words are being drilled into him. He is also discovering appropriate usage spontaneously.
Last night, Shell had gotten him ready for bed and was taking him upstairs to his bedroom. He decided that he wanted to get in our bed rather than his.
"No Micah bed. Mommy bed, yes," he said. Adding, "No more talk about it! I will spank your bottom. Do you hear me?!"
Where in the world does he hear such things?
29 june 2004: Feast of Ss. Peter and PaulToday is the feastday of the Apostles Peter and Paul, a commemoration that always brings my son Micah to my mind. At this time four years ago, Shell and I were in the throes of discovering that Micah is permanently and profoundly deaf. There are certainly greater challenges that I can imagine as a parent, but raising a pre-lingually deafened child with the goal of functioning in a hearing world is a fairly daunting task. In late June 2000 we were discovering just how "flexible" our plans and priorities for our lives could be.
We parents like to feel that we are in control of our children's lives, that we are a formidable force for the protection, guidance, healing, and molding of these little beings we love so much. It is a rude awakening indeed to find that this "control" is so largely illusory. Our formidability doesn't really extend very far beyond administering Band-aids and Children's Tylenol.
In the midst of all that turmoil four years ago -- frantically rushing from doctor to doctor and from audiologist to audiologist, reading websites and medical texts, weighing options and strategies -- we attended the liturgy for the feast of Ss. Peter and Paul. In the Epistle lection appointed for the feast, St. Paul writes of, among other things, his "thorn in the flesh" and asks God to remove this nagging weakness from him.
As I stood in the nave of our church four years ago, frustrated, tired, and scared, I could readily identify with St. Paul's request -- both for myself and on behalf of Micah. Remove this weakness. It's too much for me as a parent; it's too hard for him as a child.
I was both comforted and challenged by the Divine response: "My grace is sufficient for you, for My strength is made perfect in weakness." (II Cor. 12:9)
Micah's future is bright, thank God! In the four years since his diagnosis, he has moved from hearing aids to a cochlear implant and we have learned more about speech-language pathology than I ever thought possible. I see God's promised grace and strength all the time, everywhere: in Micah's furrowed brow, as he works hard to pronounce consonants he's never heard; in his younger brother's seemingly effortless acquisition of speech; in his older siblings' constant vigilance for rogue rainclouds and lawn sprinklers that might damage the fragile hardware that links Micah to the world of sound; in Shell's endless capacity to learn new skills to cope with unexpected challenges.
Our "thorn in the flesh" has not been removed. Indeed, I believe that most of the time God doesn't remove these difficult, unpleasant experiences from us. Instead, He gives us His all-sufficient grace and demonstrates His strength in the face of our weaknesses.