Thursday, April 4, 2013

Lots has been happening in the last 6-8 mos!

Fall led into winter and we soon found Rei slowing up more and more and becoming more hesitant to work.   We made several trips to the vet and eventually wound up going to an orthopedic and neurology specialist to try to figure out what's going on with her.   When nothing was confirmed from these visits, she gave us the answer herself unfortunately. :(

She began to refuse to eat her food and was becoming sick as well as having really, really horrific gas that was the most foul smelling thing any of us or our friends had ever been exposed to before!   The final symptom that pushed us to do bloodwork, was she had the runs all weekend.  We tried multiple things and ultimately right at the first of the new year it was determined by blood work that Rei has Irritable Bowel Disease. :(  

We began a heavy regimen of medications and shots to improve her appetite, work on stabilizing her gut, and hopefully get her feeling better again.   She responded very well to the medications and her speed came back to nearly normal.   However I quickly figured out that with our active lifestyle that when I took her to a place of high stress, it would stress her too much and cause the IBD to flare up and the symptoms above would rear thier ugly heads. :(     So it was decided that it was indeed time to retire Rei to a lifestyle of leisure since she' has more than earned it in her working lifetime with me.  

This was an extremely painful decision as I had also gone through the process in October and November to be evalauated and identified as a candidate for a Cochlear Implant.   My surgery was scheduled for January 9th, 2013 and I had 10% speech recognition in the left ear and 8% speech recognition in the right ear.   As my vision has progressively gotten worse, I am struggling more and more to catch the visual cues to be able to hold a conversation on my own. :(

I chose Advanced Bionics for several reasons and ultimately glad I'd done so as Advanced Bionics has come out with a new processor to be released this summer with the technology to link and communicate with my Phonak Hearing aid in the other ear.   While the left ear was my better ear, both ears were so bad and Mike is typically on my left side more than often in situations like the car, in church, etc, in which I figured I'd increase chances of hearing him by doing that side first.   Thus I went with the AB Neptune- a waterproof processor that runs on a AAA battery and has a clip that is on it to clip in your hair, on clothing, or an armband.

So I had the surgery on January 9th and was somewhat nervous but excited to get the process started, as I'd heard so many good things about the CI's.   Mike went with me and I came out of surgery and everything had gone very well.   However there is where things started to get hairy.   In recovery I started getting sick and unable to keep anything down, including needed pain meds.   This went on into the night in which a second trip to the pharmacy was needed to pick up some anti- nausea meds to help with this.   Thankfully this worked well.   Within 3-4 days I was able to shower and such, but was getting some pretty serious vertigo when I would stand up to move about in the house.   The surgery was on a Wednesday and on Monday, my first real day home alone, I went into the other room to meet someone at the door and by the time I came back to the couch, I was in a room spinning whirlwind that terrifying as if I closed my eyes it only made the room spin even more.   I quickly called my dr and they called in some meds for this as well and thankfully that cleared up very quickly and took care of it completely.

Then came activation day on February 6th, 2013.  From here are my updates:

Feb. 6th: 
- Just beeps and tones so far. Still at the office.
- Alrighty, already on setting 2. :) Now just gotta take time to let these high tones work themselves out. :) Hearing more and more environmental sounds. :)

- Ok have to laugh, I just jumped when the phone rang or the first time and heard it through the CI. That was totally weird. LOL

Feb. 8th:
- Moved up to level 3 today, but have to day I'm wiped, all the high tones are quite draining!

- Busy day today- to the school for the morning and follow up with the CI Surgeon. I'll admit yesterday was getting frustrating awith all the high tones. A couple of times wanted to pull the processor off and chuck it across the room. Trying to stay positive and remember this is a journey, not a race and to be patient. :)

Feb. 13th:
- CI mapping no. 2 today. Still adjust ring but high tones backed way off thankfully! Now have homework assignment for every day so we are getting there. Now have volume control. Ready for speech to start kicking in but know its still really early.

Feb. 15th:
- Oh my gosh!!!! I'm hearing words! Alex is here working with me on practice lists and I hear the words! He sounds like Alvin, but I can hear them. I have to look at him since they sound so different, but I definitely hear them!!!!!! Sooooo excited!!!!

Feb. 17th:
The last 36 hours have been interesing and fun. :) I have discovered I can hear the kids and women's voices - all sound like Alvin though. I have discovered that while I can hear Mike's voice, it is only in certain conditions- quiet and I can really focus on him, but if he talks in a really high pitched voice like a girl, then I can hear him! LOL! New things every day! :)

Feb. 20th:
All I can say is Wow, Wow, WOW!

Since my last email a lot has happened. Last Friday I realized I was hearing words! I was only hearing the higher pitched voices, but I could hear them. Alex was working with me on my words and it clicked. I could heard the kids and other women's voices, but was unable to hear Mike unless he talked in a high pitched girly voice. We've had some pretty good laughs with this. :)

This morning I went for mapping #5 and at 3 weeks post activation. They took me into the sound booth twice today where the first time I was hearing between the 30-40 decibel range and then we came out and made some tweaks to re-test and got that up between the 20-35 decibel range across the board!!! "Normal" hearing is at 20 decibels. :D :D :D There is a dip at the higher pitches but she thinks she can flatten that out with time. I go back in 2 weeks for my next mapping/appt.
This testing was to hear the sound/tones itself, not words or much else, just to hear the sound at that level. So I didn't realize I was hearing at such a higher level until we got back in the room and saw the chart sitting on the desk as my audie played with the computer. I said Holy Cow!!! Is that really what I'm seeing???

I'm not hearing normal speech yet, but over the past couple of days I've started hearing the lower toned voices in the Heliumnized voices/alvin voices with the higher pitched ones, so that tells me my brain is starting to pick up on those. We changed a handful of settings and turned on the Clearvoice program that is supposed to minimize background noise and pull out voices. My audie said with her patients it was a 50/50 things. Half of them love it and half say they can live without it. Well I'm in the half that loves it. :D

At the moment things sound really loud, but we went to Chipotle for lunch and I was actually able to order my food completely on my own for the first time during lunch rush for in VERY long time. Mike was just like uh what do I do, he was ready to jump in as he normally has to do, and I didn't hear a couple of times, but with a repeat, I got it completely on my own! :)

It was almost emotional too as we sat down and I dialed the sensitivity dial back (this is the distance range of microphone- so I can change it for when I want to only hear what the person in front of me is saying or dial it out to hear someone across the room better) and Mike and I were able to have a full conversation with him speaking at a normal voice throughout our lunch for the first time in nearly a decade. :D Needless to say it was a bit awkward as we are not used to talking in places like this. LOL!
So we are on the road to the right direction and my audie is pleased so far and we continue to work at it. I've just gotta get my listening homework in daily and keep working on that so that the speech will come! :) I absolutely have regrets so far and really excited to see what the next appt in 2 weeks brings!

Update on Rei: She was having a lot of accidents last week and upon calling the vet as they increase in frequency, a urine sample revealed a UTI. So now that she's on meds for that, it's going MUCH better. :) She's feeling a lot better and the accidents have stopped. :) We are still slowly weaning off the prednisone for her and I had my phone interview with GDF and that went well. All my paperwork is now turned in and just waiting fo word back from GDF at this point.

March 13th:
This was 2 wks from the prior appt- 5 wks post activation. Up until the last 3-4 days before that appt I'd been feeling really good about things and feeling like I was hearing well and then all of a sudden things just tanked! Not sure what happened and my audie wasn't either, but I couldn't hear diddly squat for those last few days before my appt!
So first thing we did was go in and do a new mapping to get me back to hearing decent again and got that in place and then went into the sound booth.
Now prior to implantation- I'd tested at hearing 10% speech recognition in the left ear and 8% speech in the right ear. So with this new test after a new mapping, I tested on 25 sentences with just the CI and then 25 sentences with both the CI and my right Hearing Aid (HA). The results were a pleasant surprise for me- which I am hearing 13% speech with the CI only and then 72% speech with the CI and HA! So it was already improvement over where I was with just the two HA's. :)
My audie was a little concerned though, as she really wants to get those numbers flipped though- as this is telling her that I'm still relying heavily on the HA. My brain is working, the CI is working, we just have to get the two working together now and that's going to mean a LOT of work on my part in doing homework, listening exercises and the kicker- Time. -which is my biggest issue. ;) She is concerned that if my right ear were to tank on me suddenly, we'd seriously be up a creek w/o a paddle and I'd be pretty non functional.
So my homework is to be doing the listening exercises and doing my best to do it on a regular basis. Work! I go back in 2 weeks on March 27th just before I leave for NY for my new guide dog, just to be sure everything is going well and make any last minute adjustments to the CI mapping before leaving town for 2 weeks.

Feb. 28th: And so the CI surgery billings begin....
Claims to BCBS so far and then goes to Medicare part B after denial/payment:
Surgery claim for hospital: $97,916.90 - unprocessed
Surgery claim for CI Dr/Specialist: $2,940.03- denied
Surgery claim for anesthesia: $1,215.00 - They paid this but we have our deductible, so have about a quarter of this to pay- Flex account coming through for that though! :)
God will provide, I will be faithful, I will be faithful and not complain. Please remind me this when I do complain. ;)
March 27th:
7 weeks post CI activation!!!!

I'm not gonna lie about it- I didn't get much of the homework in at all over the past 2 weeks. I've been crazy busy at the school, running errands and going to different appts for Rei and with setting stuff up for her retirement party that we held last Friday. The last two weeks I felt like I was hearing more but since I wasn't getting the homework done was afraid I hadn't progressed much. I've begun to have the feeling that I wasn't hearing as much out of the right ear too. However I am finding that I can definitely hold my own in ordering food in a noisy restaurant, talk to people in a group setting and so forth, which I've not been able to do before. I also heard the robins tweeting for the first time two days ago! I've heard bird noises before, but I could actually hear the tweeting this time. I had to ask Katie if this was what it really was, but it was. :)

Last night Mike and I worked on the homework where he was reading sentences from a paper that I've never looked at and for the most part, I was able to repeat them word for word back to him! Which was a little creepy almost- he keeps telling me I'm running out of excuses for not understanding him now! LOL! We did figure out though that I'm getting some trail off high pitched whine noises at the end of words that have an "i" or "e" sound. We also figured out that I'm doing really well with mulch-syllable words and sentences as I'm able to put the context together well and figure them out- which is good as my brain is putting more and more together and probably using the CI more and more as it should be.

So we went in today and yeah she smacked my hand for not doing the homework, but she was really happy after we came out of the sound booth. We told her about the sounds at the ends of certain words and what I'd been experiencing. She was thrilled that I was able to hear the birds and was surprised I knew what they were. She also was happy that I was really noticing the ability to function and hear well in group settings. :)
So we went in the sound booth and did 3 tests. First we tested speech recognition with just the CI which I was at a whopping 52%!!!! Up from 13% two weeks ago. :) Then we tested the CI and Hearing aid together and I was up to an amazing 93%!!!!!!! I don't know if I've ever had that much speech recognition ever. I do still struggle and use a lot of lip reading and this was in the quiet environment of the sound booth but Hey! I'll take it! :D Lastly just to make sure my hearing wasn't changing in my right ear, we did a hearing test on both the right and left ear unaided to see what I have. My right ear hasn't changed and there were a very few low tones I was able to hear in the left ear, which was surprising since you normally don't have any hearing left after implantation. She was very happy with all this so we discussed last minute tactics and how to set up my processor to be waterproof- so I can be good in the rain if we are caught out while training in NY. I also learned how to hook my processor directly into the laptop, so I can work on my exercises while there in NY in the evenings. I've also gotten a hold of some audio books which I have paper copies, that I intend to take with me and work on listening to while I read along in the paper copy. :) I'm excited!
On the financial front, we haven't received much yet, but then the hospital for some reason still did not have Medicare in their system for everything. I made the call yesterday and got this all worked out. They had received the denial from Mike's anthem insurance for the surgery and have just sent the bill to Medicare to see what it will be then. I was instructed to contact them back after the bill comes to me and it is processed through Medicare and then they will evaluate if they can do any financial assistance. So we are still not sure what our portion will be at this point. Just praying on it and know that God will provide us a way to handle this. :)
In regards to guide dogs, we will have Rei through Saturday mid day and then Melissa & Isaac Crowe will come to pick her up and take her home with them. It's going to be a hard day for sure. I then fly out early next Tuesday morning, April 2nd to be gone through Friday April 2nd and will fly home with my new dog then. I will try to update everyone as we go along on this journey. :)
Thank you for all of your prayers and support and will definitely be in touch! God is soooo good to us! :)