Adventures Kayaking with Neptune

This weekend my family and I went to our mountain house for the memorial day weekend.  It was a great time up there just being with family.  We had a great weekend weather wise, no rain. 
My  adventure was being on the kayak and using my neptune processor.  What a difference from hearing the paddle in the water to being able to talk with some people. I was indulging on all the sounds. This was the first taking it in water. 
Things are coming along with the hearing and I continue to be amazed with God's goodness and grace through this time.  I have to say I come to appreciate the gift of hearing, it is something that we take for granted. 
One verse that has been playing in my head is Proverb 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding.  In all your ways acknowledge him and he will make you paths straight."

THE Post-Activation Hearing Screening

This morning I took the time to really reflect on Psalm 23.  Verses 2-4 really stick out to me right now:
He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul.  He guides me in paths of righteousness...Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me your rod and staff, they comfort me." It helped me remind myself of patience and grace.  I held this with me going into my appointments today.
Today I returned to JH for a mapping session.  My audiologist took me back to the hearing booth to screen my hearing with my CI.  For once I was not nervous and very eager to see what my hearing test looked with the CI. It is neat to see my scores on the higher end than at the bottom of the graph :) My audiologist would have liked them a little higher, but due to all the twitching, it set back the results a little.  But my understanding of speech in quiet was 85% (this was just sentences) compared to my total score of 10%.  My doctor and audiologist are very pleased with the results.  I am excited.  When I first met with my doctor and audiologist communication was not easy, reading lips and writing things down, now I still read lips but less writing things down.  I notice improvements each day.  Sometimes taking steps back and than leaps forward.  Baby steps I have to remind myself of.  It is basically like I am trying to learn a new language.
 Due to the twitching and we played with it today seeing which electrodes were setting it off and different volumes making the twitching worse.  This was a fun game as my audiologist watch my face twitch to the different tones. I am going back to her in June for her to keep an eye on it.  there were some points today it really went.  She told me to email her with even slight changes or problems. 
As I was driving to my appointments it was raining.  I love the sound of rain and to be hearing it was awesome.  Not just the tapping on my windshield but the steadiness of the rain too and it dripping off the roof.  Just these little glimpses each day make me appreciate it all. My audiologist words to me as I left "it is all worth it right with the surgery"  I said "you got it."  No I don't regret it. And the trips to MD are worth it. 
Yesterday when I got down to my sisters, my nephew looked at me "Hockey, you play with me."--pointing to the hockey sticks and ball.  So we played some toddler hockey.  Today he wanted to play again but it was rainy and wet.  I am picking out some words of my nephew, this is a challenge, but determined.

Music to My Ears (WOW)

It has been five weeks post activation and each day I have been listening to music even though it sounds like bad static, still exposing myself to it and listening to familiar songs.  I was driving today and put the radio on once again, I still need it at a increased level but down more (before surgery even up it was static), I was able to make out the actually lyrics or most of them.  My heart sunk in and felt unreal of what I was hearing.  I was blown away, so even listening to music if it sounded like nothing but being persistent is worth it.  It is only going to get better :).  I continue to be amazed with my CI and loving it.  I have come to appreciate even the annoying sounds.  And the one thing nice if I don't want to hear something, I can simply remove the processor.
The song "Blessings" comes to my mind today feeling blessed to be hearing the things that God created.

Patience and the other P on the journey

I title this entry as Patience for a reason. This is one thing that God is really working on in my life through this journey.  And Patience is a must no matter which route one goes with a hearing loss, I have to admit there are times that "yes" I do get impatience through it, but keep reminding myself to push forward and be persistance.  It reminds me of someone learning to walk or learn, like my niece Penny she is trying to pull herself up and than falls but keeps on trying.  You take steps forward and back but continue making process.  Even the slightest improvement is a gift.  Right now it is exciting for me to noticed the little things that I can now hear.
Today I went on a walk, no no adventure in getting bit, but I heard some dogs barking, yes I look left, right. up, down and sometimes turn around and sit down until I locate the sound, but I heard the dogs barking.  I continue to enjoy God's creation more and more as I hear all the birds and each having their different song.  I can now identify a woodpecker with his sound.  I think I am going to have to take my bird book back and try to figure out the birds through their songs.  I have to remember one time I was so annoyed with the bird making a nest outside my window when I was young b/c they woke me up so early in the morning, now I am loving the sounds of the birds.  And one thing is if I simply don't want to hear something I can simply take off my processor.  One advantage with hearing loss/deafness. 
The thing that caught myself on my walk this morning was there were children waiting for the bus to go to school.  A first grader and third grader (guessing) said "hi"several times,  I heard it but took time to locate direction.  I waved back to them and said "Hi.  Have a great day at school."  They smiled back.  As I continued walking I felt my hear sank and feeling overjoyed.  Hearing children, even though they repeated. Still I heard it.  Yes these are older children but it is a start.  I am so glad that I did not take my music with me, rather enjoyed the sounds of nature.  I have been exposing myself to children and yes older ones are better, still difficult but grasping it.  Speech is still harder to gain and sounds are becoming more clear and identifying them through visual cues too. Voices are sounding less cartoonish, men's voices still can be high pitch and same with children's but making more things out. 
There are times where I feel that yes I am overdoing it and have to step back and give myself a break, but I am missing the sounds so much and wanting to wear my processor all the time. This is one difference with me using the hearing aids.  I continue to be amazed with all the things that I am hearing, much more than with hearing aids.  I have to say I actually turned the radio lower for the first time in a long time. 
Retraining your brain to hear and process takes PATIENCE and is very tiring. Just think of learning a new language or just having to relearn all over again. But it is paying off and keeping me motivated.  I continue to progress with my balance and challenging myself in that area.
I am trying not to look at the whole picture, rather little steps and improvements.
As there are frustrating days and times of uncertainity I reflect on Psalm 121 reminding me that God is with me all the way of this journey.  He will lead me through. It also helps me to remain patient and keep on going.

Wow moments--2 weeks post activation

I continue to be amazed with how I am progressing with  the CI and just having the feature of Clear Voice.  As I reflected back on the week, the birds are sounding more and more amazing than ever and trying to pick out what type of bird that I am actually hearing.  I am enjoying nature more than ever being able to hear more things. 
PTL my twitching is getting better, but have to keep the settings low and try short periods of the higher settings gradually.  Hopefully this will work and not have to go back to the old programs, which would be a trip down before my next appointment and that means I am more progressing than taking a step back. 
My balance is progressing and doing very well with therapy and seeing improvements with it. :) I am progressing to more challenging activities and always eager to try new things.
Today I went for a walk with my friend and yes my pace is back to normal and walking much quicker. I have to say I am eager to start jogging again and know I am getting there with therapy.  Today, there was a biker behind me and my friend pulled me over to let me know that someone was passing us, as the biker passed I could catch a little glimpse of the sound the bike made.  Just little moments of these things that I am hearing just continue to amaze me. 
It is exciting in taking steps forward.
I continuing with auditory therapy and that includes interacting with others, listening to books on tape and listening to music and watching tv, but also listening to surrounding sounds.  I have to say I am enjoying the many children's books on tape.  Voices are becoming easier and less cartoonish, except mens voices are still high pitch sounding (sorry guys you do still sound like mickey mouse).  Some voices are stilll squeaky but I am being able to understand more speech.  It is helpful following along for a message at church or book on tape in this process, but able to actually follow is becoming easier.  Yes this is exhausting but a good exhaustion.  Many people are enjoying that I change the colors with my processor and my pick of the day.  I like the pink.  I am very open about people asking about it.
This past weekend I attended a women's retreat with my church and it was amazing and just the message that I needed to hear.  A great reminder of who I am in Christ. On Friday evening the speaker handed me the notes for me to follow along, on the notes there was a sticky note with this quote "Life isn't about how to survive the storm, but how to dance in the storm because our hope is in Christ."  As many of you know or recognize this quote from my mom.  It is one that I hold onto too through this time.  I told the speaker how much and why that quote means so much to me, she was very encourage and we both agree that that sticky note was to be on the outline notes.  Just a blessing from God and a reminder I needed.
The one new song really stuck out to me "You Made Us Your Own"

Tweaking session/ Mapping 3

It is hard to believe that I have only been using my CI for 11 days now.  Still amazed with things that I am hearing.  Last Friday I went for my third tweaking session and she did some more adjustments and tested my speech discrimmination (basically me understanding what she is say).  It took a couple times of her repeating but I did very well with it, finally getting all the words.  Off to a good start. :) Speech still sounds cartoonish and very squeaky and it is hard to tell mens voices verses women. Men's voices are high pitch so there are times when I am hearing someone talk, I have to chuckle with what it sounds like.  Since I was not born deaf or hard of hearing this is a normal response.  It is a process of retraining the brain to hear.  I am listening to books on tape and just interacting with others.  Still small and large groups are overwhelming and challenging, which is normal too.  Yesterday I went on a walk with a friend and I heard a helicopter, I could detect a sound and my friend pointed it out, but I heard it :). 
One thing I have been noticing is that my right eye and side of the face twitches when I wear the processor, which is an indicator that it is too strong and overstimulating the brain.  I contacted JH and right now my audiologist is out on vacation so I have to wait until she gets back but looks like another trip down before my next appointment the end of May.  I talked with the my doctor's nurse just to make sure it was not something from the surgery itself.  She was surprised that I was talking on the phone and said "you must be doing well and surprise her" until I told her I was "cheating and using a caption call phone"  We both laughed. The phone is the last to come. Mostly we email but she need to ask some more questions.  I have to keep the program to the 1st one and turn it down, yes it makes things difficult but it helps to lessen the twitching.  I don't regret doing this and just keep telling myself it is only going to get better.  I remind myself of Dory from finding Nemo as she said "Just keep on Swimming." 
The song "Lean on Me" as there are times where I do get frustrated. I am learning to be patience and take breaks when I need to.
Have a great day

Some "wow" moments

I just continue to be amazed that I can hear out of my right ear finally.  Sounds and voices may not be clear yet or hard to detect what things are but grateful for the gift of hearing.  Yesterday taking a walk, yes i heard various sounds but finally figured that I was actually hearing the birds. I venture further with taking Simba to the groomers and vet yesterday which, I had to stop them several times to slow down and I was up front with them about my hearing.  Let just say Simba was not my best buddy yesterday, and today was very apprehension to go with me but we went for a short walk in the park and he was fine. 
I also went to my CG with my church last night and that was an adventure.  I still have to rely a lot on lip reading and was able make out bits and pieces.  This was a challenge but very motivated with retraining my brain to hear. It was the first large group setting and a bit overwhelming.  I just remind myself that it is only going to get better and have to force my brain to recognize the sounds and speech. I am not using my hearing aid just the CI and this will be for 3-6 months.  I am amused with what people's voices sound like and even myself.  I feel like I sound like a fish underwater.
It feels good to get back into doing things, but still need to take things gradually.  I never knew I would miss cooking so much :)  I am starting to drive some but have certain times I have to refrain from it. Many people ask what things sound like and voices.  It is very cartoonish, like people are talking under water and echoey.  I have to remind people to slow down and face me still. Also that I am not ready to use a regular phone or and IPod yet.  Time will come.  Each time I go for more mapping, my audiologist is slowly working with me with speech recognition without me looking at her and in a quiet setting.  They will soon test me in the hearing both on grasping tones and word recognition.  Patience is the key and Perservance.  It is neat how God is sustaining me through this journey.  The song "All I have is Christ" has me going on this journey.
I think of my mom often and how excited she is in heaven, knowing that she is with me all the way.  The colors I picked out (although I change them, which is awesome) are in rememberance of her. Yes the CI is helping me hear and I do not regret it, there will always be a part of deafness with me and it is okay.