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!

It dawned on me today that I really do have my normal energy back – I feel like decorating for the holidays!  It has been a couple of years since I have felt like it!  I think I ended up doing it last year, but was still on prednisone, so it was a tough job and truly exhausting.  The year or two before that we were going to be out of town for the holiday and it really just seemed like too much work to get everything down from the attic just for a couple of weeks and then be gone for the big day.  This year I will be gone on Christmas, and debated whether to do it, but I honestly feel great and decided that I absolutely DO want to have our tree up, etc. this year!   Hurray! I   I’m just enjoying feeling really good again.  🙂     I’m so thankful!!! I am going to work hard to get it all done before Tuesday.  I expect to be pretty mentally drained (and tired) for a while after that.  I think it will perk me up to see the festive living room!  I will be reaching into my encouragement bag, too.  I have no doubt that will be like a hug as often as I want one! 🙂  

Sometime yesterday the last of the steristrips came off.   I’m guessing in the shower, although I really am not sure!  The incision is completely healed now.  There is still some tenderness there and especially where the magnet is in my skull, but as long as I don’t touch it, it feels fine.  The scar tissue is a little wider than I thought it would be.  I have no way to see for myself what it looks like, so the other day I tried taking a picture by myself and let’s just say that didn’t work too well.  Last night I asked Chet to see if all of the steristrips were gone and also to take a pic for me so I could see what it looks like, finally!  It really does look good, all things considered.  I guess the scar tissue is heavier than what I am used to feeling there because there are a lot of times I think I have a hearing aid on and then realize I’m not wearing one on that side.  It feels like it when I think about it!  I’m hoping the last of the swelling and tenderness will be gone by Tuesday.  That day is getting pretty close, now!

Our married kids decided to start alternating spending their Thanksgiving with each side of their families starting this year, and they are coordinating so that the year that it’s our turn we can all be together.   They decided to start with the other side of the family, so this was our year to not have all of the kids here.  Kinsey, Chet and I were invited to Jessi’s mom and stepdad’s home to spend the holiday with them, and we had a wonderful time together!  We enjoyed getting to know them better, and being with as much of our family as possible!  It was really nice for me to participate in making a couple of dishes for the dinner, but not be responsible for all of it or the clean up or housework, etc.  What a treat!  I feel great and fully recovered since surgery, but it has only been 2 weeks so it was especially nice this year!

Like all of you, I expect things to get very busy once again.  Some of us will be on a trip for Christmas and some here, so we are having an early family “Christmas” on Dec. 12.  Better get cracking on some shopping and meal planning!  

 I have been thinking a lot this week about all that I am thankful for (along with every one else).  The list is so long!  There are things I never would have imagined, but can honestly say I am thankful for.  Losing most of your hearing is not something anyone would want to happen, but so much good has come from it, I am not sorry.  I often think about how thankful I am that my hearing loss wasn’t this severe until after my kids were mostly grown.  Children’s voices are the very hardest to hear and I know deaf people can be wonderful parents and raise their children well, but I am so thankful that I didn’t have to struggle with communication during those years.  

I am also really thankful for the internet.  I remember when you couldn’t just look things up at home in only a few seconds.  I have spent so much time online googling information about all of the things associated with this from the medical things to the technology, to what are the options available in various venues, etc.  I have also used the internet to keep my family and friends updated and of course, that works the other way and keeps me conntected to what others are doing as well.  It truly amazes me sometimes.

We have really great health insurance that has covered a lot for me this year and I am really grateful for that.  My husband’s job has been such a blessing to our family and it was God’s providence that led him to it, so I am very thankful.

I won’t give you the whole list.  Those are just a few things that relate to the topic of this blog that I don’t take forgranted.  God  IS so good.  One thing I think I have really  come to understand this year first-hand is that trials are a blessing and an opportunity to grow.  I’ve known it, but understand it more fully now.  We talked in a flock group last week about things that “seemed” bad when they happened, but actually turned out to be good, and let’s face it – for christians, that is all of it.  God says that all things work together for the good for faithful christians, and one of the blessings of being older is having lived long enough to see that, time and time again.  I am learning to be thankful in all circumstances at a deeper level than I ever have before. We know by faith that God will make it all work together for the good, but it is so exciting to actually come out on the other end and see some of the blessings and good that result from that experience.  Often those are things that we could never have imagined ourselves!  It is so amazing to watch God do His work!  

I am continuing to heal and am truly getting better every day.  I have to wait until my steristrips and bandage come off on their own but am allowed to trim as it all  loosens up.  So far we have been able to trim twice, and the area isn’t nearly as sore as it was to the touch.  I’ve been able to wear my reading glasses a little bit, but I have to say that it does start feeling irritated fairly quickly so I’m just wearing them for short periods of time.  I can feel a definite round shape just above my ear (in my skull!) so I know that is where the magnet is located.  I thought it was swollen a little and that is why it is protruding just slightly, but now I’m not sure.  Maybe that’s it, but it isn’t as tender to touch as it was so I am also wondering if it might just protrude a bit.  It’s not noticible to the eye but you can definitely feel it when you touch that spot.  It will be interesting to find out.

I am back in my normal daily routines for the most part.  My energy level is normal and it feels good to be getting caught up after taking a week or two off.  I have to admit that even though I am getting caught up, I haven’t quite found my “groove” yet for cooking for the family and making food for my hubby to take to work!  I haven’t thought about it much since surgery and today I remembered he would probably like a meal to take for his 10 hour shift(!) about 15 minutes before he left!  Since I haven’t cooked and most of the leftovers have been eaten and I haven’t shopped for groceries….you get the picture!  I was scrambling!  I am happy to report that today I sat down and planned a week’s worth of meals for our family and made a grocery list!  Tomorrow I will get the shopping done!

I have been thinking a lot about activation day and what my life is like these days when it comes to hearing.  I’m excited about activation day, but I think that is when the most difficult part of this process will begin for me.  I am hoping that since I have had a chance to learn about the technology available to help me, and have learned some sign language and have several tools to help me cope with the voids and obstacles I have communicating that it won’t be as difficult as it was last time i was functioning more as a deaf person.  Technically, I don’t believe I am considered deaf, although without my hearing aid in I hear only the occasional random noise.  Sometimes it is enough to clue me in that I should look at the phone to see if it is lit up (ie ringing) but sometimes not.  I don’t know how much sound I will hear initially or how quickly I will be able to make sense of it so I don’t know how long or difficult that period of time will be. 

I think sometimes I forget how kind and patient most of the people I spend time with really are with me.  Many strangers are also kind and patient, but sometimes they are not.  Sometimes I get tired of explaining that I need to lip read along with my hearing aid, or explaining on the phone that I am using a captioning phone and there may be long pauses while the captions “catch up” to the conversation and I can see what the speaker said.  I know I have mentioned before that I think my more outgoing personality (at least with people I know) has helped me not allow myself to become too isolated.  I find that I am becoming more isolated anyway.  I’m not saying I am totally isolated, but just that I am more isolated than I was a while ago.  I think that this  hearing loss/deafness was “new” for a pretty long time and required a lot of adjusting on my part and also for my family and friends, so we all had it in the front of our minds.  I think we are all used to the idea now, and people know what I need (for them to face me and be in good light so I can lip read, to speak clearly and a little louder than normal, etc). I think that I do so well with lip reading plus my hearing aid that it is easy for people to forget that there is anything going on with me.   It all seems more normal to all of us now.  Group situations are still by far the most difficult.   Most group conversations go on around me now and I rarely really know what the topic is, much less have the ability to follow or contribute to the conversation.  Sometimes I insert myself by asking questions, but I guess it’s the same principle as I stated above – I think in some ways I get tired of everything having to be about me and my hearing problems and asking people to work at including me.  It’s just easier not to participate sometimes.  Is that normal and just par for the course?  Should I be working at it even when I don’t feel like it?  Should I be reminding people that they have to make an effort to keep me “in the loop”?  I don’t want to be constantly asking people to make extra effort to include me.  Maybe it is ok not to be included in everything.  I don’t know.  I really am not sure where that line is. People already make an effort – I don’t really want to keep asking them to do more and keep making my needs a priority.  I know I have brought this idea up before and the general consensus was that it’s good to remind people.  I just don’t like to constantly be asking for special effort and consideration on the part of others.  Overall, this is not something I deal with daily.  I just was thinking about it today.  

I am mostly feeling very positive and upbeat about everything that is happening!  I am so very blessed!  The medical knowledge and technology that God has allowed is amazing!  To think that they can actually give some form of hearing back to the deaf is amazing!  I am surrounded by so much love and support and encouragement – it can bring tears to my eyes!  I am so thankful for each and every one of you and the care and concern you show for me just by staying updated on my progress and situation.  Thank you so much for your love and for your prayers!  I truly cannot imagine what the last year and a half in particular would have been like without your support.  My heart aches for those who do not have that.  I will be looking for people who are isolated from hearing loss and make every effort to encourage them and help them participate in normal conversations and communication that most of us (including me before this all took place in my life) really do just take forgranted.

Just a quick update this morning – today I am feeling back to normal!  Yesterday I did some housework for the first time since surgery and felt just fine!  Then I ran errands with Chet all afternoon and did great!  My INR was 2.4 so no more shots! That is happy news.  I don’t have to have more blood work done until Wednesday now.  I slept great last night and can honestly say I feel pretty much like myself again.  It is wonderful.  I only had a couple of moments yesterday where I felt slightly off balance so that seems to be improving as well.  The steristrips are loosening a bit so I guess the next thing will be for them to come off and for me to be able to treat that area normally once again.  I noticed that the feeling is back in most of my ear  – there was a numb area before.  It doesn’t feel 100% normal yet, but is obviously getting there.  I am feeling thankful today!  

My recovery is  going well….I am still a little more tired than normal, but not as much as I was last time I posted.  Still having very little pain.  I had my blood work done on Monday to see what my INR is (that is the number they check to see what dosage of warfarin I need).  The goal is for that number to be between 2.0 and 3.0.  I was at 1.4 which is very low.  Tuesday I was again at 1.4.  These are the lowest numbers I’ve seen for my INR in the 7 months I’ve been having it checked – the lower numbers mean I am at more risk for clotting.  Higher than 3.0 would mean greater risk for bleeding. I know that for the surgery I had before this one (to remove my vena cava filter) they wanted my INR to be below 2.5.  I suspect they wanted it lower than that for this type of microsurgery, but I don’t really know that for certain. They have me continuing the daily injections plus have been increasing my warfarin dose.  Today my number was 1.8.  That is still low, but at least it is heading in the right direction.  I will have to have another blood draw tomorrow.  Hopefully we will get into the proper range soon!

Today was a very busy day – it was Kinsey’s 19th birthday!  We did quite a few things and quite a lot of visiting with family.  I am tired now, but did well overall.  I can tell I am continuing to improve.  I can’t wait until my incision is completely healed!  There is some mild swelling around that and the spot they placed the magnet in my skull and some tenderness to the touch – obviously I would expect that.  I am really just happy that it doesn’t hurt unless I mess with it! (Yes, I KNOW i need to try not to mess with it!!!)  I find that I sometimes think I have a hearing aid on that side and start to reach over to “take it off” for a break!  It isn’t because I am hearing anything over there.  It’s the weight of the steristrips behind my ear.  I am aware of feeling something there and forget that it’s not a hearing aid (which I am used to having!).  There are also occasional “twinges” of pain in the inside of the ear, but only momentary ones.  There is a “full” or “heavy” feeling in there.  It actually is common to have that feeling when you have sensorineaural hearing loss.  I am noticing it more now.   I have progressed to the point where I am allowed to wash my hair in the shower now.  I still try to minimize how long that area is wet.  I use a shower cap while I’m washing the rest of me, then put a cotton ball at the entrance to the ear canal to keep it dry and then just a quick wash and rinse over the incision/steristrips.   I make a point of blow drying the area along with my hair as much as I can.  Tomorrow I plan to start doing some housework again.  My hubby and daughter have been taking care of things since mom left, but I am feeling ready to take on some of it at this point.  I will rest as much as I need to.  I guess that is one of the luxuries of being a full-time homemaker.  There isn’t much that I HAVE to get done or can’t work around depending on how I feel.  

I was thinking that this post is probably kind of boring – not much to report.   Then I decided that boring is good at this point!  I have had a lot to do the last day or two regarding Kinsey’s birthday and also trying to complete her requirements for a spring admission to college.  Because of those things, I haven’t spent much time thinking about all that is happening from any other standpoint than the physical recovery. So far so good!  Thank you for the prayers and please keep them going!  I appreciate it!