I am back from my family holiday cruise!  I spent the week with my mom, my brother and his family, my sister and her family, and my son & daughter-in-law and my daughter.  We had a wonderful time!  We aren’t able to be together often, so we especially enjoy it when it works out.

I wasn’t sure how my listening experiences would be on the trip.  Group situations are always more difficult than quieter settings, and there are a lot of different sounds and settings on a ship than I normally encounter.  It turned out that I was able to function quite well in almost all situations!  It’s not that I don’t still need to lip read or have things repeated sometimes, but I am able to follow most conversation with a minimal need for people to repeat – at least compared to what my norm was with hearing aids.  I have learned how to use the zoom mic program in noisier settings and it makes a tremendous difference!  When we sat together in the noisy dining room I was still able to understand people at my table if I made sure to focus.  I still have to work at it in those settings, but it was better than what I am used to!  If the waitress came up behind me or to the side and I wasn’t aware of it, I wouldn’t hear her at all, but those kinds of things are to be expected.  I could understand some parts of the announcements made on the ship but not all.  I was thrilled when we went to a show in the theater and heard a comedian.  I could understand the majority of what he said!  I would say my comprehension/hearing in that situation was better with the CI than with my hearing aid plus an assistive listening device!  Keep in mind that I am still only 3 weeks into using this and am WAY ahead of where I am expected to be!  It is mind-blowing and so exciting to experience!

There were still a few things that were difficult for me on the ship.  I had no way to wake up in the morning at a certain time if I needed to.  I can’t hear an alarm clock or wake up call or even a knock on the door.  In an emergency during the night (when I don’t have my CI on) I would not be aware of any announcements or alarms.  It was also tricky when others in our group wanted to touch base with me.  Normally you would call or knock on the door, but again, if it was a time I didn’t have my device on, I would not be aware of those things even if I was in the room!

I  had the opportunity to use my Neptune (waterproof sound processor).  I chose the Neptune as my second processor for this exact reason.  We travel and we love to be near the water.  I wore it for the first time in the ocean in Costa Maya, Mexico.  As expected, once I submerged my head and the mic got wet, the sound was muffled but I could still hear!  It stayed muffled for several hours after that, even though I tried shaking it out a bit (as per the instructions).  Suddenly it just cleared up and that was that.  It was really nice to have it for times we were just getting sun by the pool area, too.  I didn’t have to worry about it getting wet and could get in a hot tub or the pool as I wanted to without having to do a thing with my CI.  That was awesome.  The next big day to wear it was on a catamaran, beach, snorkeling excursion in Cozumel.  I knew that the strap to my dive mask was going to be a problem.  It goes right across the area where my headpiece lies (and on the waterproof version, the mic is in the headpiece).  I checked with Dianna (my audiologist) before the trip and she told me that it would be okay to wear the strap over it – it would not damage the equipment, but might be uncomfortable.  I worked on getting it all positioned just right – it was a little tricky.  I finally got it set up and when I jumped into the water from the boat (scuba style where you hold your mask and snorkel with one hand and step off in your fins) much to my shock and dismay the strap to my mask came up and my headpiece was gone!  Scary moment!  Thankfully, the processor was still securely clipped to my bathing suit strap and the cable and headpiece were still connected to that!  It was tricky getting it all situated again in the water with waves hitting me during the process, but I finally got it done and this time did not notice an issue with things being more muffled – not as much as before.  Once I got out of the water, it sounded perfectly normal again!  So cool!  It was so great to be able to communicate and understand speech in that situation!  I rinsed my CI equipment with fresh water when I rinsed my mask, snorkel, and fins on the boat and it worked out well.  A woman on the boat heard my family mention to me that I should let one of the crew know about my hearing loss in case they needed to call people in for some reason since I might not be able to hear them.  She asked if I needed someone to sign for me.  It turned out that she teaches deaf and hard of hearing high school students and works with kids with CIs all of the time.  We had fun chatting and she was interested in my Neptune.  She had heard of it but never seen one.  Another man also asked me what it was and was interested in hearing about it.  Quite the conversation piece!  It is the only waterproof processor out there right now, and is fairly new on the market, so I guess that is to  be expected.  I have now worked with it enough to be comfortable doing all of the things necessary to maintain it.  After it has been in the water, you have to remove all of the plastic covers and put the unit in a drying box.  It isn’t hard to do, but some pieces you have to pull pretty hard on to get off and there is a little bit of a knack to it.  It is kind of scary when you aren’t sure what you are doing to be pulling on things like that on such an expensive piece of equipment.  Now I have a feel for it and have successfully done it a few times, so that feels good.  

Another small perk of being a CI user – when we were driving for 20 plus hours each way, I always had the option to take the unit off and could enjoy as much quiet as I wanted for sleep or driving or whatever and the rest of the occupants in the car could listen to whatever music they wanted to at any volume!

That reminds me, one night I attended a karaoke night and although music still doesn’t sound like I know it should, I was pleasantly surprised at the fact that it is starting to sound more like I would expect.  I know it still is not what it actually sounds like, but it is getting closer to something I might be able to enjoy from time to time again.  Prior to this, for years now, music has been more of an annoying noise than something enjoyable.  It was just sound that didn’t really sound like anything understandable or pleasant. The exception is a capella church singing, but that hasn’t sounded “normal” for quite some time either.  I am hoping it will get better and better as I continue to adjust to my CI.

Overall, I am doing great and this technology has far exceeded my expectations!  I thank God daily for granting my request for a successful outcome!    

A funny thing happened last night. I was doing laundry. I leaned over to pick up a pile of dirty clothes from the floor next to my dryer, and suddenly everything went completely quiet. I looked up, and my entire cochlear implant was hanging by the magnetic headpiece on the side of the dryer! I didn’t see that coming! Obviously, it was the external parts, but it was quite the sight! I hadn’t really thought about anything like that happening, but I guess I will need to watch how close I get to metal things! Crazy! It was good for a laugh!

I have made my decisions about which accessories to keep. I will keep the smaller battery as my third option. I like wearing the smaller ones better than the larger one enough to be willing to change it at the end of the day if needed. If I know I have a particularly long day, I will opt for the large one, but those days don’t happen too often. I am also going to keep my T-Comm Mic. It will give me the most flexibility with my Neptune and would be more expensive to add later than the cost of replacing a universal headpiece if I need it one day. I honestly was thinking that I am careful enough with my things that it is not too likely that I will need to replace it until it just wears out, but I have to say that after the dryer incident, there could be circumstances that would break it that I have not yet learned to anticipate!

My next audiology appointment is tomorrow. I am not sure exactly what we will do. I’m sure there will be more fine tuning. There may be more testing with sounds or word recognition. I will make sure that I fully understand how to use my Neptune processor since I will likely wear it on my trip next week. I wore it around the house one day and the waterproof headpiece is a bit heavier (it has a microphone in it, unlike the universal headpiece and has waterproof material protecting it). It fell off at one point. I think I will need to add an additional magnet to make sure it holds. I am a little bit concerned about the idea of using it for the first time in the water in the ocean. If the processor falls off for some reason, it could be lost for good. It will be clipped to my bathing suit strap pretty firmly, so that shouldn’t happen, but I may ask what my audiologist thinks about that. I won’t have time to try it out in a pool. Also, I think my dive mask strap goes over the spot where the headpiece goes. I will need to find out if I can put the strap over that part or not. I may have to take the processor off for snorkeling, but be able to wear it on the boat.

I feel like thinks have been so busy lately that I haven’t really spent much time contemplating all of these recent changes in my life and what it all means. I was prepared for a difficult period of time as I transition into this new way of hearing, but it really hasn’t been all that difficult. It felt like I barely missed a beat with my lifestyle. I am hearing and understanding just as well with the implant as I was with my hearing aid before. I am very thankful for that!

I began doing some of my listening practice this weekend and it is going well. I can see that it will be tiring, but productive. It is a new thing for me to rely on hearing again rather than primarily on visual clues along with fairly unclear sound. How exciting! At this point, I am using visual cues along with what I hear to help my brain connect the two, but I am understanding the majority of what I have done so far by sound. I am at beginning levels at this point and I suspect it will get much harder as I progress. It is exciting, though!

Thanks for continued prayers! God is good. I am thankful for my many blessings and the prayers, encouragement, kindness and patience from all of you!

This isn’t the biggest deal in the world, but I can close my eyes to pray now, and can understand almost every word spoken by Chet and Cory, anyway, when they are leading the prayer!  Obviously, one can pray with their eyes open, but it is a luxury to me to be able to close my eyes and listen to what is being said and not have to lip read to follow along. When you have to lip read to follow along,  your mind is slightly distracted because it is working while trying to listen!  Anyhow, I appreciate small things like that more than ever before!

 I have not been able to attend church since my implant was activated.  Church was cancelled the first day after due to weather, then I was sick on Sunday, and then I had a car accident on Wed. around 4:30.  It took a long time for the police to arrive and take care of the paperwork and then the tow truck to come, then reporting it to my insurance company…I literally hung up from talking to the insurance company about the time we had to leave.  I needed to regroup a bit – especially after having spent the entire day finishing up my grocery and holiday shopping, and then the stress of having an accident. I needed to pull a few notes from my bag of encouragement (given to me by some sweet ladies at my church for days I needed extra encouragement!) and it honestly did help.   I am so thankful there were no injuries.  My car wasn’t so fortunate, but it can be fixed.  The school bus that hit me wasn’t so fortunate, either, but the damage was less extensive to the bus than to my car, obviously.  Let’s just say it has been an eventful week in many ways! I am looking forward to seeing how my hearing will be in a church setting with the sound system, etc.  I hope it will be great!

Last night we had a family Christmas with our children and our grandson.  It was wonderful!  It is very difficult for us to manage a time when we can all get together, so we love it when we are able to do so.  It felt like Christmas!  We did all of the things we traditionally do (including making the “kids, the youngest of which -besides Owen- is 19” all go downstairs at 6pm to pretend to sleep and “wake up” to the stockings that Santa brings!), it was a lovely time. I still have difficulties as you would expect with my hearing in these situations, but it is so much better than we would have imagined! It was a wonderful evening and I will cherish that time with my loved ones.

I look at the events that have happened in my life over the past year and a half and I really can hardly believe how much has taken place.  I feel like I have had a couple of close calls this year, and thank God that I am still here.  I am very aware of how blessed I am – there have been many ups and downs during that time period, but God has always been faithful and I am so grateful for his work in my life.  

I think I will actually finally have a little time today to try my first book on cd.  I am actually looking forward to practicing and seeing how it goes.  I will let you know!

Thank you all for your encouragement and prayers!  I appreciate it!

It is hard for me to believe that it has only been one week since I started using my cochlear implant.  I am amazed at how much I can understand!  I believe I am following more conversation than I was with my hearing aid and this is only the first week!  Today I met with my audiologist and we decided to eliminate Program 1 (the one I like the sound of better, but isn’t as clear for me) and Program 2 (more distorted sound – a little helium and a little mechanical- but more clarity of words) and I now am exclusively working with the program I get the most clarity from.  It has now been moved to Program 1 spot and she added something called “Clear Voice” to it.  It enables my device to make more automatic adjustments.  It will be able to “recognize” repetitive sounds like road noise in a car and soften them.  It will help soften background noise in noisy places like restaurants and hopefully enable me to hear more of what I want to hear.  She also added a new program to the #2 spot.  It is called a zoom mic.  Since it is a separate program, if I am in a situation where it is noisy and I just can’t hear a specific person (even the Clear Voice can’t always make a big difference – hearing devices just can’t distinguish well between speech you want to hear and speech you want to tune out) I can switch to that program and it will eliminate all noise except for what is directly in front of me.  If I am facing someone and using that program, I should be able to hear them.   It will be something to play with a little bit and find out what situations work best with which programs.  The zoom mic does not work on my Neptune (waterproof) device, but the Clear Voice does, so I will test it out as well.  Today, Dianna also did a short test of sounds for me.  She covered her mouth with a paper so I couldn’t lip read and handed me a chart with some sounds like “shhhh,” “ahhh,” “sssssssss,” “baaaa,” “maaaa,” etc.  I got them all right!  WITHOUT LIP READING!  AFTER ONE WEEK!  I am still blown away when I think about this and so thankful!  I still need to lip read quite a bit, but possibly less than with my hearing aid. Overall, the appointment went great.

The only downside was the driving part.  I drove by myself today and traffic was much slower than I expected.  There are a lot of roads that are still pretty sloppy, but the interstate was in good shape and there really was no reason for traffic to be moving at 30-35 mph there!  My GPS took me a different route than normal to avoid heavy traffic and I honestly don’t know if it was faster or not.  I was pretty much at its mercy because I had no clue where I was!  I finally made it to the clinic about 10 minutes late but that wasn’t the end of it!  There is a parking garage nearby where we generally park.  I have been there before when it was difficult to find a space and you can spend 15 minutes or more driving around looking for one, then there is still a short walk to the building where my clinic is.  Since I was running late, I was concerned that I might be walking faster (and less carefully than normal) and there was a risk of me slipping on ice.  Because I take blood thinners, any bump on the head can be serious (or life threatening) and even minor injuries like sprains can be a much bigger deal than normal since the swelling is actually bleeding.  Anyhow, I just try to be more careful but it was a consideration here.  The other option is free valet parking.  Sometimes it is very busy there, too, but you get out right in front of the door to the building.  There is usually a fairly long wait to get your car after.  I decided to go for the valet parking, thinking in spite of those things it would likely be faster and minimize my walking on icy sidewalks.  I got one car length past the turn in to the parking garage and hit gridlock.  Literally, 5 or 6 or more cycles of green lights and no movement whatsoever!  Ugh!  So frustrating when you are already late!!!!!  I finally made it to the valet and go to my appointment 30 minutes late.  Dianna was gracious and still saw me.  She knows I am not generally late for appointments!  Afterwards, I waited for an hour and 10 minutes to get my car!  Unreal!  Let’s just say it was a tiring morning.  I honestly handled it pretty well and didn’t get too aggravated!  

We are having our family Christmas with the kids and Owen on Thursday, so I have tons to do between now and then!!!  I may not blog for a couple of days.  I think it will be nice to be basically done with all of my gift gathering and wrapping, etc. by then!  We have a box or two to ship, but should be basically done.  Then I have a trip to pack for!  I was expecting to have major difficulties with communication on the trip so I am absolutely thrilled to be doing so well.  I don’t  get to spend much time with my side of the family (Chet’s either for that matter) so it will be wonderful to be able to talk to them all!

Today went so great!  We had a ladies’ Christmas Tea this morning with women from my church and it was the first time I’ve been in a group setting with my new CI.  Groups are still difficult.  I’d say that right now, the “group” background noise was amplified more than the specific person I was speaking to was.  With my hearing aid, background noise is amplified along with the speaker, but I can usually “zoom” in mentally and follow quite a bit.  Today that was very difficult to do.  The speaker seemed quieter than the rest.  I think there is a program that will be added soon that will help in those situations.  I am still basking in the joy of being able to understand so much!  After refreshments, we sat down and sang together.  Singing is always tricky with hearing problems.  I really had no idea how it would go.  I’m happy to say that it went great!  I did need for the person next to me to give me some feedback and let me know if I was basically singing in tune (like any hearing person!) and how my volume was.  In the past, if someone will give me some honest feedback about that, I can usually make the adjustments I need to be able to sing with everyone else without drawing attention to myself.  I teared up a little at one point, because I could hear the others singing fairly well.  I feel I was hearing more of the group singing with my CI than I generally do with my hearing aid plus my Domino Pro (the personal assistive listening device I use in church to amplify things even more).  That was so exciting!  Maybe it was similar as far as understanding, but having the extra sounds really filled it out more.  I also was able to sing just fine myself!   I needed a little help with volume, but apparently was ok with singing in tune!  I can’t tell you what  a thrill that was!  It was really not sure if I would ever be able to sing with the church again.  It blows my mind that this is all happening with my nearly deaf ear!  

I have noticed that the distortion seems to be less than before (yay!) and although I do still need to lip read, I have been able to hear much softer speaking than before.  Several times I have had conversations with people who were in an environment where they were speaking very softly and with lip reading I could hear enough to understand the majority.  That is a definite improvement over my hearing aid.  

I continue to be amazed at how God has worked in my life.  I once again thought today about how well He has prepared me for this situation ahead of time.  Everything I’ve had to learn over the years regarding hearing and understanding is helping me to have the best result possible now with the least amount of frustration.  It does still take effort, but I know how great it is going and I couldn’t be more thankful!  I give God the credit and the thanks for this outcome!

Today I also made a trip to the library and checked out 4 children’s books on CD.  I found someone who had a CD player they offered to lend me, so I should have that tomorrow and I will begin working on my “homework.”  

Thank you all so much for checking up on me.  Thank you for praying for me.  It blows me away when I think about how many people have told me they are praying for me and how many times they have done so.  I feel your love and support.  I’ve been reaching into my bag of encouragement from my sweet sisters in Christ and it seems like the notes are always so uplifting and always well timed!  

I can’t wait to see how things go in Bible class and the assembly tomorrow.   

Today is officially my 4th day as a cochlear implant user. I am pretty comfortable now with the daily routine of charging batteries and putting them on and taking them off, placing the processor and headpiece in the drying box overnight, and placing the magnet correctly on my head. I still have to work a bit at getting the unit properly resting on my ear – the sensations are still not completely normal after surgery and it makes it a little harder to tell. I have to actually feel it with my hands and check to make sure it is resting properly on my ear that way. Not a big deal but it will be nice when the nerves are completely recovered. It is all fairly comfortable for the majority of the day. Late in the afternoon, I start feeling some irritation or discomfort. Nothing too bad, but enough to make me want to readjust and think about how glad I will be when the surgical site is not longer easily irritated. I have been able to wear my reading glasses again, which is great. I’m sure if I wore them for a long time they would irritate the site, too, but for an hour or so I am fine.

I used Program 2 the entire day. I will be going with that one. The distortion was less noticeable today, so I am hoping it will sound pretty normal to me soon. I plan to go to the library tomorrow to check out some children’s books on CD as suggested. I am ready to start working on some of my word comprehension. I realize that I am understanding quite a bit, but I do hope for quite a bit of improvement with some consistent effort on my part. I actually was a little surprised when I realized that this is only the 4th day I’ve been a CI user. It feels like it has been longer than that. Tomorrow I have a ladies’ tea to attend and that will be an interesting test to see how well I can do in a group setting. I am realistic (and optimistic) so I know it might be difficult, but so much has been better than expected that I feel kind of like “who knows?” I won’t be disappointed if it is hard. I know that I will learn how to handle those situations with my equipment and that as my word comprehension comes up it will improve.

Still thanking God for this amazing blessing and a great experience so far!

Today is the day I went back to the audiologist for more programming and to receive my second “backup” sound processor called “Neptune.”  This is the waterproof one.  It can be worn out of the water as well as in water.  It is not worn on the ear.  There is still a headpiece (the magnetic part) that is attached by a cord to the processor.  The Neptune processor can be worn on a clip and clipped to a collar or bathing suit strap or a hat or whatever you want basically.  It also can be worn in an armband or a lanyard.  There are a few other options, but those are the ones I chose.  The headpiece is white or black and the Neptune base is white.  I have an aqua blue piece that I can snap on to jazz up or change up the color and also a purple one!  I figured this is the one I can have some fun with and go a little crazy with color.  That would seem appropriate in a beach or pool setting.  The box that my Neptune came with that contains all of the parts, accessories and tools is seriously about the size of an airline carry on bag (the one that has wheels and comes in a set of suitcases!)It is HUGE!  It will be fun to try it out sometime soon.  

I did a little more “testing” this morning with Chet over coffee to see if I still favored one program over the other.  The result was the same as what I concluded yesterday.  I am definitely getting better clarity and understanding more words with Program 2.  The other one still sounds more natural and a little more pleasant to me, but once again, I could understand some words without lip reading (if they were spoken slowly and distinctly) with the second program but couldn’t make out much at all with the first.  When I talked to Dianna (my audiologist) today about it she said she tends to recommend going with the program with the most clarity even if it sounds more distorted.   She told me to take a few more days to decide (we meet again on Tuesday) and once I make the decision, we’ll go with that.  She said it will be better not to keep going back and forth between programs at that point.  It is quite obvious how much more distorted this is when I first switch from Program 1, but then I get used to it.  I can understand her point.  

She told me that I have all of the sounds now that the implanted electrode supplies.  On the first activation day, she tested my comfort level on these sounds in groups of 4 – today she did some in groups and some individually.  It just keeps fine tuning things for me.  The volume level that was most comfortable for me today was louder than it was last time.  She told me that at this point the goal is not to get used to louder and louder sounds.  It is just about what is most comfortable for me.  It still amazes me to hear sounds that I haven’t heard in years.  I can’t wait for my word comprehension to improve.  I think I will be one who finds the sound with my CI to be very close to natural sound.  It already is in some ways.  I used Program 2 almost all day today.  It doesn’t seem all that distorted right now.  I’m sure if I switched back to 1 and then came back it would be obvious again.  We did the process of adjusting the comfort level for me for both programs again today.  After that she was able to load those onto the Neptune, and then we tested it out.  She did have to increase the volume for both programs for me on the Neptune, but once she did that, it all sounded exactly the same as on the Naida.  We spent the rest of the appointment going over the equipment, parts, maintenance and care of this sound processor and how to tell the difference between the waterproof parts and the regular ones and how to use a different set of controls.  It all went great.  It is unbelievable how much this device does for someone deaf or severely hard of hearing and their quality of life.  What a blessing!

Chet and I were out and about for most of the day again today.  I have been wearing my Naida since about 7:30am and it still is comfortable more than 16 hours later!  Yesterday I used a smaller battery.  Today I tried my larger one.  The smaller one lasts about 10-12 hours right now on one charge.  Dianna said that will go down a little as we add more to my programming.  The larger battery lasts about 20-24 hours.  I got 3 rechargable batteries with my processor and had the option of sizes to choose.  The smaller one is completely hidden behind my ear and is slightly lighter weight to be wearing all day.  The larger one is still mostly hidden, but it does hang down far enough that you can see the bottom corner of it from behind my ear.  Not a huge deal, but it is just a little large for my ear size.  I wear it more than 10 or 12 hours per day, so both evenings I used the smaller battery, it died in the evening and I had to switch.  What I am thinking now is that I might wear the bigger one most of the time, but use the smaller one when I am more dressed up or out and about.  I am not usually gone for 10 hours running errands or going somewhere else, so I could just switch batteries when I got home and not have to carry extras around with me.  

This morning I also tested out my bluetooth device (called a ComPilot).  It worked with my cell phone.  I couldn’t understand what was being said on the phone, but am hoping that will come with time and practice.  That would be phenomenal if I could use a cell phone again!  I like being able to use the ComPilot as a remote for my processor also.  I put it around my neck when we were getting ready to leave and when I turned it on, there immediately was a sound like a phone ringing and then when I tried to answer it it sounded like talking (not intelligible to me, though) and then it gave me the impression that it was some kind of recording.  The thing was that my phone did not have bluetooth turned on and did not receive a call and neither did Chet’s.  Our home phone did not receive a call either.  I have no idea what I was picking up!  Chet suggested that maybe this was one of those situations the doctor warned me could take place with my brain coming up with something that didn’t happen because it doesn’t know what to do with the input.  If that’s what this was, you’d think I would have “imagined” something I could at least understand (like the recording!).  Oh well.  Dianna said she doesn’t know what that could have been, so maybe Chet’s right. I guess we’ll see what happens in the future.  I think the bluetooth features will be amazing once my word comprehension improves.  I can see a day in the not too distant future when I might prefer what I hear with the CI over what I hear with a hearing aid.  I asked Dianna if the improvement I had with my hearing on the left side changed my hearing levels enough to  disqualify me from being a candidate for another cochlear implant eventually, and it does not.  We don’t know about the word comprehension yet, but we’ll see where we are when the time comes to consider it again.  You have to have hearing levels that meet a certain criteria and also have word comprehension that meets a certain criteria in order to be a cochlear implant candidate.  Right now I’m just going to focus on getting the best result I possibly can with the one I already have.  I’m not really much more tired than I normally would be from working harder at communication.  As I mentioned yesterday, I really am well prepared for how I can function best at whatever hearing level I am at.  I think I probably am a little more tired than I normally would be, but it’s not a huge difference, at least today.  I continue to give God the credit and to thank Him for carrying me through the surgery safely and giving me such a successful result.  It is turning out to be so much better than I could have imagined!

“Robots on helium” is the best description of what things initially sounded like that I can think of! Somehow I forgot to mention the “helium” part when I wrote about my experience yesterday. That was one of the first things I noticed, immediately followed by very “mechanical.” I was thinking about this today and realized that God prepared me perfectly for this point in my journey through all that happened over the past year and a half. There was a time when my natural hearing sounded very mechanical and very monotone – there was no deviation at all in tone. It was just like the old movie War Games where the computer would ask: “Can we play a game?” in a completely monotone “voice.” That period of time lasted just a couple of weeks and then with steroids, I regained the more normal sound to my hearing – I didn’t regain the decibels that I actually lost from that particular episode, but the quality of what I could hear was restored. I’m bringing this up now because I remember what that was like, and I remember being thankful that I could still understand words and communicate, but what a loss it was to lose the richness and variations in the human voice. What I am hearing now sounds mechanical in the same way but I have a much better range of sounds with the CI than I did back then, and it is not monotone at all. I can also hear some of what the natural voice sounds like underneath the distortion this time. Before, there was no difference between a man’s voice or a woman’s and no discernible difference for me between people’s voices that I have known for years. Now there definitely is a difference and I THINK I could do a pretty good job of telling who is who even with my eyes closed. What that means is that this completely artificial input, sounds much better for me even as distorted as it is right now, than my natural hearing did at that point in time. I will likely see quite an improvement in this with my new device over time and with practice. It makes it very easy for me to feel excited about what I am hearing, instead of disappointed or upset like some people implant recipients are. I also experienced what it is like to be functionally deaf all of the time for a while, and now it is that way when I take my hearing aid or CI off, so I can fully appreciate what an amazing job this device does and how much communication can take place with it. I have years of practice at reading lips and have learned to do that pretty well – it is helping me a great deal now. So far I am not feeling distressed or frustrated – I do have to work more at communicating with the CI than I do with my hearing aid, but I am so much further along than anyone would have expected, that it is much more thrilling than frustrating. I know how to handle the situations that have arisen so far. God prepared me well to have some perspective about what this device really is doing for me. I’m so thankful! This adjustment is going very smoothly because of the way God prepared me for it. Another way that all things are working together for the good! I have to say that even though I do hear sounds with more clarity with my hearing aid right now, I am actually getting more sounds with the CI. They are not yet quite as clear, but this is only my first full day of using them and the audiologist only activated some of the tones it is capable of. I believe we will be adding to that tomorrow. There is lots of potential and I can see the possibility if I continue to improve that I will be hearing better and with similar “natural” quality with the cochlear implant than with the hearing aid. I’m not sure about that, but I have no qualms at all about the idea of living with two CIs someday if needed. I can see it being great!

I am getting the hang of how to use the equipment I have now. It doesn’t take very long to get familiar with it, but since yesterday I have learned how to properly get the device on my ear and the magnet to connect in the right spot, how to change programs and adjust volume, how to charge and change my batteries, how to use the new drying box at night to remove any moisture from the CI and keep it functioning well, and how to charge up the ComPilot which allows me to connect to other devices including bluetooth! None of these things are difficult at all, you just have to do it all a time or two to get the hang of it.

My homework for today was to try out the 2 programs my audiologist set and see if one works better for me than the other. It’s a difficult call. Program one sounds more like natural sound to me, although there is a little bit of a “hollow” sound to it. I am finding, though, that words might be slightly less distinct than with the other program. Program 2 sounds much more distorted than number 1. It is especially noticeable when I first turn it on. After a while it is less noticeable and I’m not as aware of it, but if I go to the other for a time and switch back to it, it is very noticeable again. Particularly that “helium” sound. In spite of that, I think the words are a little more crisp and clear. I seem to be able to understand more speech with it and sometimes can understand a few words without lip-reading. Oddly, when I was watching tv, I felt like I might have better understanding with Program 1. I still definitely needed captions. I would not be able to follow a tv show without them much at all. I can understand and hear more distinct speech on the tv than I can with my hearing aid, but still not enough. I suspect that will improve a great deal. I don’t know if it will mean I won’t need captions anymore. Most CI users still do continue to need them.

I only looked over some of my paperwork briefly late last night but I have a whole folder full of websites I can go to for practice on my word comprehension. The audiologist suggested that I go to a library and check out some books on CD and devote some time daily to listening while following the text (she said children’s books are best to start out – they are simpler and the speakers usually speak fairly slowly and distinctly; they also tend to follow the text word for word which is important at this stage). She also recommended that I spend some time reading aloud to help me get used to how my own voice sounds. That reminds me of another way I feel God prepared me ahead of time for this – I have lots of experience with adjusting to changes in how my own voice sounds to me and working on my volume for others and sometimes keeping my voice sounding as natural as possible. I’ve done this with speaking and also with singing! It feels normal and comfortable to me to be making this adjustment again. I LOVE seeing how God works through His providence like that! Chet made the comment to me today that there is a difference in how my voice sounds when I am not wearing any device (and am therefore basically deaf) and when I have my CI on. Without a device, he says my voice becomes more nasal – that is exactly what happened (only more drastically) when I was deaf for a few weeks. I find that really interesting. It is also strange – I can’t tell any difference at all! I also find it strange to hear that my voice has begun to do that again now that I have begun to use a CI. Why would that be? The only thing I can think of is that I did lose some hearing with the surgery and maybe it was enough to make a difference with this, even though I wasn’t using that ear much. I was getting some sound, it just wasn’t usable. I’m not sure what else it could be. Interesting question to me.

Tomorrow I have an appointment at 1pm to work more on programming my Naida (the sound processor I have now) and then I will also get my Neptune (my second processor which is waterproof) and there will be activating to be done with that, another set of equipment and tools, and since it does not go behind the ear but is structured differently, there will be more learning to be done about how to use it and care for it properly! I also have to know how to change parts like filters, cords, and covers on both sets. It will be another busy day but I am looking forward to it.

Today was the big day!  We arrived a few minutes early and my hearing test was the first appointment of the day.  It didn’t take long.  They checked my hearing levels but did not do the full blown testing with word comprehension.  The first good news of the day – I did not lose all of the residual hearing in  my implanted right ear!  The hearing levels are lower than before surgery but I can still hear some sounds there.  Truthfully, it’s not useful sound so it doesn’t make much difference, but it is something they will continue to monitor.  Engineers are working on technology that won’t damage residual hearing when you receive an implant and that will be able to work with whatever is left someday.  The information could be helpful for future technology.  The other bit of good news – my hearing on the left side has improved!  No one knows why or when, but there is some improvement since my last hearing test in April!  It could mean that the hearing aid/cochlear implant combo for me might really be best.  I know I could lose more hearing at any point in time, so we’ll have to see how it goes.  They told me again today that the earliest we would likely even consider looking at a second implant would be 6 months from now.  

Appointment number two was a post-op followup with my surgeon. She and another resident who also operated on my checked out my incision.  There was one small “crusty” spot on my scalp where they found a part of one of the inside stitches (there were none on the outside) had worked its way out.  They said this is common.  They snipped it and looked over the rest and told me that the swelling I have is also quite normal.  It will go away over time.  The inside of my newly implanted ear looks perfect.  They also checked on the left ear since I had an infection last visit and although it doesn’t look infected now, the ear canal was damp again.  They said it is from wearing my hearing aid – my molded earpiece completely fills the canal, so air doesn’t circulate.  I asked when I can start swimming again.  That is by far my favorite workout activity.  She told me that I need to wait one more week, then I can go for it.  Because she suspects my ear is going to continue to be susceptible to infections if I swim, she gave me a syringe to use for flushing out my ear with vinegar!  After I swim, she wants me to rinse the ear out with a water and vinegar solution, then use a blow dryer to dry it out!!!  She warned me that it is important for the water to be a little warm or at least room temperature.  If it is cold she said that it will probably make me dizzy!  She also gave me another prescription for antibiotic drops while I’m on vacation.  She thought it would be a good idea to use them then since I will be away and will be swimming in the ocean.  All great news at that appointment.  I got the thumbs up for activation!

The last appointment was the big one!  It was wildly successful!!!  My audiologist took some time to explain to me what was going to take place and then reminded me that about what I should expect to ear.  She started out by explaining a few features of my new processor, and then she worked on getting the correct strenghth of battery.  You want it to be strong enough to stay put, but not so strong that it causes headaches or irritation to the skin.  It needs to be able to come off fairly easily.  I ended up needing the strongest one for now.  Once more of the swelling goes down I might be able to use one that is less powerful. Next, she did some testing with her equipment while I was wearing the processor, but that didn’t require any input from me.  She had me fill out some paperwork while she worked on that.  Next she went through some beeps and had a chart that had dots to represent how loud the sounds were to me.  I literally pointed my finger to the dot by the words “Very soft – barely perceptible” and then followed them up to “very soft” “soft” “comfortable but still soft” and then “comfortable.”  We did this several times with different groups of tones.  That was basically how she mapped the first program.  She then did all of it again for a second program.  I’m not sure what is different about the two.  It is something technical on her end.  She wants me to use one of the programs today and then the other tomorrow to see if I favor one over the other.  The first sounds I heard were kind of like muffled thumping sounds but also tinny or mechanical.  Hard to describe.  During the course of the session they became a little more distinct.  Each of the sets of tones sounded different.  The big news was that I could understand speech right away.  That is highly unusual and bodes very well for me!  It sounds very mechanical and tinney still, maybe also a little echo, but it was understandable!  I still need to lip read with normal volume and speed of speech.  As an experiment, she held something over her mouth and spoke to me and I could understand it!!!  It took a second for me to kind of process what I heard, but I did get it right!  Do you know how long it has been since I’ve understood speech without lip reading?  A while!  Very exciting.  I honestly felt pretty calm and matter of fact at the beginning of the session.  It was cool to hear sound on this side after so long, but it got really really exciting as I realized just how well I was doing!  I’m so thankful!  God answered our prayers with a big fat yes!!!!!  Once again, His plan is always the best by far!!!!!  She saved those programs and loaded them onto my processor, and the rest of the time we spent going over some of the parts of my equipment and how to use them.  Then she had me practice putting it on a couple of times.  It takes  a little practice to figure out where to put the magnet.  Also, it was a little hard to tell if the behind the ear part of my processor was sitting correctly behind my ear because the nerves are not completely back to normal yet and the feeling of having it in place was not obvious.  

We left the clinic with hugs and honestly just feeling on Cloud Nine!  I got a really nice and BIG backpack full of stuff that goes with my equipment!  Cool!  It was pretty heavy!  There is a lot of stuff!  Tools, spare parts, drying equipment, storage equipment, the bluetooth device, lots of instructional material (including some websites where I can go for listening practice/training, etc.  What a thrilling day!!!!!

As we headed out to meet up with Kinsey for a celebratory lunch, I heard a repetitive ticking noise.  It was the turn signal!!!  That is something I haven’t heard in years, even with my hearing aid!  I found that it was actually still somewhat difficult to follow conversation in the car and at lunch.  I do still need to lip read in those situations right now.  I’m not complaining!  I am so much further along already than I ever expected to be.  I think audiologist speak more clearly and distinctly than the average person because they work with hard of hearing and deaf people all the time. 

I am supposed to wear my device as much as I can tolerate even when I am home alone.  I am supposed to go without my hearing aid on the other side most of the time.  She did tell me that it is ok for me to wear it occasionally if needed.  That was another little bit of good news!  When I am on my family trip later this month, I could opt to wear it once in a while if I need it.  Maybe I won’t if I progress rapidly from this point!

Overall, I am feeling incredibly blessed and incredibly thankful!  It has been an amazing day!!!!!

Tomorrow is the day that I have been thinking about, praying about, researching and working toward for many months now.  The decision to have cochlear implants was made back in April.  I’ve experienced a lot during my hearing loss journey, particularly during the last year and a half.  I know what it is like to be functionally deaf and I know what a blessing it is to have options and ways to bridge the communication gap when you can’t hear. I’ve been able to access so much information and acquire amazing technology that has given me the ability to live my life fairly normally and do most of the things I’ve always done.  I miss things, but the important things I generally don’t miss out on.  People are there for me.  They are patient with me.  They are kind to me.  They show me consideration – much more than I would ever expect.  They pray for me.  They encourage me.  I’ve seen much good come from this situation that I never would have imagined.  Someone recently said to me that they imagined I must have had a period of anger about all of this.  I haven’t.  I honestly can’t imagine why I would ever be angry about it.  I can understand people feeling sorry for themselves, although I haven’t ever really felt that way either.  I don’t know why.  I’ve always been able to see the big picture here and “go with the flow.”  I didn’t have a choice in the matter; it happened.  End of story.  You deal or you let it take you down. As I’ve said before, this is not a tragedy – not even close.  It’s nothing more than a change on life’s path.  Where would we be without events in our lives and trials that mold us and shape us?  We are strengthened by these things.  God blesses us by giving us these opportunities and He makes all things work together for the good – often in ways we could never have imagine.   Of course there are days when I’m tired and sometimes tired of dealing with it all, but not many.  There was a period of grieving.  There will be a lot of effort required on my part to make this cochlear implant as successful as possible. I believe it will be worth i and I will reap the benefits of that effort for many years to come!

I honestly don’t know what I will feel tomorrow.  I’ve had a lot on my mind this week that isn’t related to this, so I haven’t spent a lot of time dwelling on it.  In some ways it feels a little anti-climactic.  Because of the change in plan about having two implants done, I haven’t had a period of deafness.  I don’t feel any different at all right now and my hearing is exactly as it was before surgery.  Other than the fact that I have a scar, some swelling, and a little tenderness still, I don’t feel like much has happened with the CI, although it has.  I don’t feel nervous at all about tomorrow.  The only thing I have any little bit of pause about is if the doctor will give the okay to activate.  They fully expect to be able to do it tomorrow – I’ve got quite a few appointments set up based on that premise.  I guess because I don’t know if the swelling I still have is typical or if it is an indication that things might not be fully healed yet, I don’t feel 100% confident about it.  I will be very disappointed if I have to postpone.  I don’t really expect to, but that is the only thing that I have any uncertainty about.  I have every confidence that I will hear some sound when they activate.  Because I’m feeling pretty calm, cool, and collected about it right now, I am not sure if I will feel emotional about hearing those first sounds or not.  I’m hearing sound now, so it doesn’t seem like such a contrast as it would have if I had been deaf for these last 3 weeks.  I haven’t been hearing sound in this ear, though.  Maybe I’m a little weird and no one else really does this, but yesterday I was sort of daydreaming and imagining the scene of activating my CI.  In my imagination (should I really be admitting this?!)  I didn’t expect to be emotional, but starting crying and I actually teared up a bit in real life, too!  I’m goofy, I know, but it makes me think that maybe I will feel more emotional than I think I will.   I wonder if it will tickle or vibrate at all down in my inner ear.  I wonder if it could hurt.  I have had the occasional “shooting” pain there – very brief and not too bad, but that’s why I’m wondering!  There will be electrical impulses going through something metal in my inner ear and directly stimulating a nerve!  Obviously, it can’t be too tickly or painful – at least not for long.  I guess I will know soon enough!

Our day starts early.  We have to be at the clinic at the U of M for an 8 am appt.  With morning traffic going into Minneapolis, we plan to leave early – probably 6:30am to be sure we get there in time.  I have a regular hearing test scheduled for 8am, then an appointment with the doctor at 9:15, then the appointment with the CI audiologist for 9:30.  They told me to plan  on about 2 hours for the audiology appointment.  Both clinics are together – they share a lobby, so we’ll pretty much stay put all morning.  I will try to update often and keep a good record of this experience.  I want a record for myself of what this is like and how it changes from day to day.  I know when I was researching CIs I went to some personal blogs of people who have them and read about some of their experiences.  It helped me have a realistic idea of what to expect.  I hope my experiences will help someone else, too.  I hope some of you will find it interesting to follow along.  It is pretty high tech and I think I would find it interesting even if I didn’t need it.  Thanks for checking in and for all of the prayers and encouragement!  I will let you know how it goes tomorrow!