It has been a little over 3 months since my ABI was turned on, and WOW! I LOVE THIS THING!!!
I can’t understand when people talk to me. I think other people expect me to, and kind of wonder what the point of the ABI is since I can’t have a conversation with them. I still have to have them sign or type on the DBC. But, believe me, the ABI is awesome. There is a point even though I don’t get speech.
In just three months, I can tell when people are around me. I can walk and hear the tap of my shoes, others shoes, or the crunch of the gravel. I can hear the dryer running. I can hear when my CPU turns off. I can hear when water is funning. I can hear the “beep, beep, beep” of the microwave when food is done. I can hear Isaiah playing with his toys. Granted, I don’t always know what the sound is until I ask, but I’m getting better at recognizing them.
I hear Edward and Isaiah talk all day every day. I’ve started picking up on a few words. When I ask Isaiah something, I sort of feel his body shake if he’s on my lap, but I actually hear, “Nope!” or “yep!” If he makes a gesture with his word he is speaking, I sometimes hear the word.
Edward and Mom always talk while they sign to me. They have to speak slower, of course, to keep pace with the signing. But, I’ve started picking up on a few of their words to. Sometimes they speak a little faster than they sign. I will put what they’ve already signed, with what I heard and can finish their sentence for them. Or sometimes I can even tell what is being said if they only sign the first letter of each word. I can’t do it all of the time, and I get it wrong sometimes, but the fact is, I also get it right.
It’s only been a short time and I seem to be doing really well with this thing. I wear it from the time I get up, until the time I go to bed. When the battery dies I have to immediately replace it. I hate being in complete silence. I love this thing, and I am improving all the time. I just want to say thanks to everyone who made it possible for me.
The National Institute of Health in Bethestha, Maryland is doing a Natural History Study of NF@. The study lasts five years, and they do testing every six months to monitor your NF2 and treat it if needed.
I was accepted into the study last week. For now, I no longer have to worry about battling the health care system trying to get the treatment I need. The NIH have some of the top experts in NF2. During the study, if I need any surgeries, they will be done there at the NIH for FREE. They do no do the ABI placements, so this wouldn’t have helped me get the ABI I needed.
It looks like I go for my first visit in June. I’m very excited about this. I will have top-notch care (like I did at HEI) and will be taken care of for a few years. Now I can RELAX. I was stressing out over not having a doctor for my NF other than Dr. Friedman and his team, but since it’s charity I don’t want to wear out my welcome, ya know?
Thanks everyone for you support! Things are looking up a bit for me medically, I think. Let’s hope it continues.
I’m home!!! Boy, it’s such a long trip from here to L.A. and back. Just getting there, or back home, takes all day with the airport security, layovers, and travel itself. It’s exhausting.
This is going to be rather long. If you want to read all about the trip, grab a cup of coffee and read on!
Edward, Mom, and I were the ones that went to Los Angeles. We left Isaiah and Dad at home. We had to fly out of Memphis which is about a 2 hour drive from here. We left the house at 2 A.M Wednesday morning. We got to the airport and got checked in. Then we got to go through security. Yippy. UGH, I hate dealing with the security people. Between Edward’s seeing Eye dog, me and all my gear, and having to take shoes etc off, it takes too long. I don’t like to be out of contact with people who can ACTUALLY talk to me. I also don’t like to not have my cane around. I feel completely lost just standing there in my own world with no cane or person.
Anyway, we had a layover in Atlanta. That airport is huge and is really frustrating for those of us with disabilities. But, this time it wasn’t so bad. Our connecting gates were very close. After grabbing something to eat we were on our way to L.A.
At the airport, a fellow NF2 crewbie picked us up. Thanks girl! The rest of the day was just relaxing. I was very nervous about the next day’s appointment. How would the ABI activation go? Would my ABI work? What would it sound like? Would I feel anything? I wonder if it will hurt? Will I be able to tell the ABI noise from my tinnitus? The questions in my mind kept racing.
I took my walker with me to L.A. because I knew it was going to be quite a distance for me to walk. I get tired easy, mainly because of my weak right leg. I walked over to the House Ear building and checked in. When going back to work with Steve, I saw Dr. Friedman. He gave me a hug. I wish Mom would have got a picture then, but she didn’t. We sat down and fired up the DBC. I’m totally loving this invention. I had Edward take the full size keyboard out of his backpack, plugged it into my braille note, and told Steve he could type away.
He said we were going to test the ABI to see if it even worked. My thought was here we go!!! He put the coil to the processor on my head and held it in place with a headband. Then he hooked me up to his computer and we started trying the different electrodes.
First electrode came on. All I felt was this shocking/tingling feeling on my tongue. Each electrode he tried was the same result. Sometimes the feeling was in my throat or the roof of my mouth, but I was hearing no sounds. My spirits started to plunge. We had tried 16 out of 21 electrodes. When we had tried them all with the same result, I thought my ABI had failed.
Then Steve turned the stimulation to a different level. When he went through the electrodes that time, I still only felt the stimulation. At last, one came with sound!!! I said, “Hey, now that one I hear something!” Steve got excited and typed, “really? What do you hear?” I listened a little longer and described the sound as a low tone sort of like a womp! His stimulation was pulsing every second or so, and it was like a “womp, womp” sound. There was no shocking with that electrode so we had a keeper! Now that I knew that the ABI did work, even just a little, I was excited.
The next electrode he tried did the same womp! A few after that only shocked. It was time for my appointment with Dr. Friedman. “Wow. Already? The morning flew by.”
Dr. Friedman came into the room. He’s great! I handed him the cell phone for the DBC (DB Companion) and he typed a greeting to me. Then I asked him if he would rather have a full size keyboard. This worked better since he had a minute to sit down and type. People can type faster on a normal keyboard than a phone keypad. We talked back and forth and I am doing well! He told Edward and Mom I look great. I believe all of my other tumors are pretty stable, which is a humungous relief. He would like an MRI in June to see where things are. I finally have a wonderful doctor watching over me! I had Mom get Dr. Friedman’s, Steve Otto’s, and my picture together and here we are.
After lunch I went back to Steve’s office/tune up place. We were on the hunt for a third electrode. He was hoping he could get three, and I believe he thought that would be about all we got. I’m not sure though, it’s just something I sensed. When he finally got to an electrode that gave some sound, it also gave shocking. He left it in the group because he didn’t know if we’d find anymore. A forth electrode gave sound and just a little tingle. He turned it down and the tingle went away but the noise stayed about the same. Finally a fifth electrode gave sound.
He set up a program with those five electrodes and turned on the processor and counted to ten. He warned me before he did it, “don’t expect to understand it, or it even to sound like a human’s voice.” I could hear him counting, but if he hadn’t told me that is what he was doing, I would have no clue. It just sounded like more of that womping each time he spoke. After he counted, he turned the processor back off. The plan was to send me home (to the Guest Center) with the ABI overnight to see how it went. I wasn’t too sure about that one electrode he left on that shocked. I thought in time I would get used to it, but it only started to cause pain each time I hear a noise. I dealt with it that night and listened to everything. Mom and Edward sounded exactly the same. There was no pitch difference yet. Myself, I sounded like a whispery robot. LOL I’ve always had a whispery voice because of the vocal cord paralysis, but I thought that was pretty nifty that the ABI let me know that I was different than the other folks talking with the whisper.
The next day, Steve asked how it went. I asked him to turn that electrode off because it was giving me a headache and making me jump when I heard a sound. He said we’d drop that one. We just had to find out which one was causing the pain. We found it and dropped it. Finally, it was completely comfortable. I could hear sounds without getting a headache or a hard shock. He counted again, but it still didn’t make much sense. Edward counted, but it didn’t sound like numbers to me. I guess that’s what most people say at the activation. At least that is what Steve told me. We scheduled another tune up for June and I was off to see what all I could hear and start the new experience of relearning to hear.
I complained about the time it took for me to walk from place to place. Edward said, “You’re doing good. Just think, last time you couldn’t walk at all, you were in a wheelchair.” I suppose he’s right but it’s still annoying that I’m so slow and get tired so easily.
The day went on. I was already getting a little used to this new sound. When I was around a lot of noise, it just sounded like white noise. I couldn’t distinguish anything. Once we got to the quiet room I could tell when people were talking. Mom and Edward went to get something to eat and it was just me in silence. That is when I picked up a lot of little noises like me typing, taking a sip of coffee, coughing, sighing, etc. Then I heard more noise and knew they were back in the room with me. Edward sat beside me and his iPhone was talking (voice over). I said “What’s that?” He said “my phone”. Later that night, he was testing me to see if I could recognize anything. He said, “tell me if you know what this is.” I said, “Static. It’s probably your IPhone. That’s what it sounded like before.” Sure enough, I got it right. He flicked his lighter for me and I faintly heard that. He asked me if I knew what a sound was, and knocked on the wall. I said, “I think it was a knock, but I’m not sure.” So I’m slowly getting the hang of this thing! Also when Mom and Edward fingerspell to me they say the words too, their words sort of make sense now. It may get better in time. I know if I could lip read, things would be fantastic!
I saw my buddy Jeremy out there and he and I had a direct DBC to DBC conversation. This thing is absolutely wonderful. I’m talking with people by myself. I didn’t have to have Mom or Edward sign to me at all. I was able to talk and get information from the doctor and audiologist myself. I’m finally getting some of my independence back! Before Jeremy left, I got a picture with him too.
I really love the guys out at HEI. They’ve done so much to help me and they’re still helping me. I hope someday I can help them in return. I go back on June 24 and see both Dr. Friedman and Steve Otto. I am going to practice a lot with my ABI and hopefully I’ll surprise Steve with my sound recognition.
I got back to Memphis after a super long day of traveling Saturday. When Isaiah got to me he kept waving “HI!!!” All excited and giving me a hug over and over. He would pat and rub my back, kiss my cheek, and rub his hands through my hair. I Said, “Did you miss me?” He signed “yes!”. I said, “I missed you too buddy.” On the drive home, he wanted to hold my hand. He is used to signing to me. When he finally spoke in the car and I heard him, he sounded like a little robot!!! I couldn’t make out what he said, but I heard my baby again. They say the more you use your ABI the better your brain gets at figuring out the new sounds. One thing is for sure, this ABI is going to get a whole lot of use from me. I appreciate all the prayers, good vibes, and support. You people have given the precious gift of sound back to me.
I know, I know. It’s been forever since I’ve written. I’ve been really busy trying to get everything in order for this trip to Los Angeles.
Thursday I have appointments with Steve Otto (audiologist). And Dr. Friedman. Friday I meet again with Steve Otto to finish up the programming for the Auditory Brainstem Impant.
I am very, very excited and also a whole lot nervous. This is it folks! This is what I’ve been working toward for over two years now.
All pray for amazing success when the ABI is activated. Also pray for my health, the my NF2 gets under control soon. Will write, or have Edward write, and let everyone know how it’s going in L.A. Until next time…
This morning when I woke up, I was excited about today. I was finally going to have my g-tube removed!
I was not allowed to eat or drink anything after midnight last night. Usually, this means surgery. I had never heard of someone having surgery to have a g-tube removed, but maybe they weren’t starting to do that these days? I had no idea for sure.
I have a couple of friends with a g-tube as well. One of them explained about this balloon type thing in your stomach with water in it. This helps hold the tube in place. I believe this is the way it was explained to me.
She said to remove the tube, a syringe is connected to the tube and the water is drawn out of the balloon. If all of the water is out, the tube slides out without any pain. It was a relief to hear this. I don’t like to go through pain, and worry about how bad the pain will be until it is over. Very strange, because I can handle a lot of pain, but I will sit and worry over something like going to the dentist.
I wasn’t so lucky with my tube removal. I did not get my hope for pain-free, or even little pain. I suffered with pain, unnecessarily.
When I was called back to a room, I laid on the bed in there. The nurse took off all of the dressing and tape around the tube. Once she checked my vital signs, the doctor came in.
He told me that it would sting for about 20 seconds. Then YANKED the tube completely out.
Sure it was only five seconds at most, but my Father in heaven. It was so painful!
I couldn’t breathe for about 30 seconds. It felt like I was being gutted alive. It felt disgusting too. I could feel the water balloon fly out the little hole. It felt like someone was dragging balls through a pipe. When I say it felt like that, that is the sound the feeling made in my brain.
Edward said it really did sound like that too. Like a string on water balloons was being pulled from a drain.
No pain shot, no sedation, no anesthesia, no draining the water. Just yanked it out. I am still in a lot of pain. I came home and took a pain pill. It took some of the edge off, and I had to take another one this evening.
I can’t believe there is a pain-free way to remove these tubes, and they did it the hard way and put me through unnecessary pain. This doctor In my opinion, any doctor that puts a patient through something like that, deserves to suffer pain too. Just to know how we feel.
Last Tuesday I went for a swallow study. They have changed the test since I last had one in 2000.
Before, I only had to eat and drink while sitting between the technology so they could see my stomach. But this time, I had to drink some slightly thicker than normal liquid while standing. Then they had me lay on my side and drink. Finally, they had me lie flat on my back.
That last one posed some challenge. No matter how hard I tried, I kept choking. Well, it’s not really choking. It is what they call “aspirating”. When something goes down the wrong way, and you start coughing, you are aspirating.
They had me drink some water, since it is the t thinnest thing possible to drink. Again, I aspirated. They didn’t tell me either way how the test went. I would have to find out from my doctor when she received the report.
I left that appointment so discouraged. I knew from before that when you aspirate, you failed. Since I did ok while standing up, I had soft stuff to eat, like mashed potatoes and pudding.
I was handling soft foods well, and began trying to drink more. Everything was going well, so I didn’t see any harm in it. I knew I wasn’t aspirating as long as I was sitting straight up.
Yesterday we finally got the results of the swallow study. I passed! I just knew I had failed!
The only thing I can think of, is they changed the rules over the past ten years. Maybe they had me drink while lying flat to see if I was able to clear any fluid out of my lungs, if it went in. Since when I coughed I cleared it out, maybe that’s a good sign and means there is nothing to worry about. Either way, I passed!
Since this feeding tube is in my stomach, and not my nose, I have to have a gastrentologist remove it. We found out today that I have an appointment for that to happen Next Tuesday. One more we and I’ll be tube free! I can’t wait!
Wow…I was just sitting here at my computer this morning typing an e-mail to my DB buddy in L.A. I looked down and what do I see?
My trach is hanging there by the neck band. The tube is all the way out of the hole. Oh geez, what to do now?
I tried to stick it back in, but I didn’t try very hard. I was afraid to push or touch it a lot. I went and woke Edward up. We called my mom and I said just to leave it out. I don’t want that blasted tube anyway. I was planning to have the doctor take it out Monday.
Well, we decided to go to the ER and see what they thought. They looked at me and saw that I could breathe fine on my own, even with the trach hole covered, and said that I could just leave the tube out and it would start closing on its own.
It is already starting to close, but they said it would take two months for it to heal completely. It’s that easy? Just take the tube out and let it do its thing? And to think, it was an accident that it came out on its own. Oh well, it’s more comfortable without it anyway.
I’m finally home! They let me out of the hospital after 16 days.
This surgery was a huge success, even if there were complications. I feel so blessed. I have an excellent team of surgeons operating on me.
There are several truly amazing things about this whole experience that definitely show me that God was at work here. Right now the one I’m thinking about is the surgeons saving my face.
I had a 5cm tumor. That is extremely large for an acoustic neuroma. It was life-threatening. It was causing me to choke on food and drinks, have no balance, falling all of the time, and making me space out. The spacey spells I was having were very scary. It would feel like I had been injected with the strongest drug out there, and I would feel like I was about to pass out. I couldn’t think, talk, focus, anything.
Now, the spacey spells are gone. I can walk using a walker, I can stand in place and sit on the side of the bed without swaying like a drunk, and I don’t lose focus anymore. I do have headaches off and on, but that is from the surgery. They aren’t near as bad as they were.
So I am home and recovering nicely. I still have a trech and a feeding tube. I am going to have my PCP get an appointment to take the trach out, I think an ENT has to do it, and order a swallow study to see if things are still going to my lungs. I think everything is fine. I know the trach can be taken out. Everyone there is safe now.
We flew home Saturday. Little Rock was very cold and the streets were slick with snow and ice. Since it was late in the evening, we had to get a hotel room for the night and try to drive home the next morning.
The long drive was even longer. My Dad had to drive very slow because the roads were so bad. I’m just glad we finally made it home safely.
We got home Sunday afternoon and as soon as we pulled into the driveway my aunt, who was watching Isaiah for me, opened my door and put him on my lap.
I gave Isaiah the world’s hugest hug. I missed him so much. My family missed him too, but at least they could call and talk to him on the phone. I had no contact at all and I would get so sad and lay in my hospital bed and cry because I just wanted to hold my baby. He signed, “I love you Momma.” Oh what precious words.
Hearing is completely gone now. It’s scary not knowing who or what is around me, if anything. At home it’s not so bad, but in the airport I nearly had a few anxiety attacks. I didn’t know if danger was around, afraid someone would try to attack or abduct me. Yes I know, I’m crazy but I am a chicken when it comes to crime. If it can happen to other people, it could happen to me as well.
It’s also very lonely and boring not being able to hear a thing when you are totally blind. There’s nothing to do to occupy your time. The only thing you have is touch. In L.A. I had two options. Talk to my parents or Edward, which can’t be done every second of the day, or read a book. I had my PAC Mate (braille note taker) and I have a digital book on it. I read it with the refreshable braille display on the note taker. Doing those two things, and praying a whole bunch, I got through those rough days in the hospital.
I want to thank everybody for their prayers, good vibes, encouragement, and support. It really helped and I could not have gotten through this without all of it. Thank you so much. I know God is watching over me. He was in the surgery and he still is here at home. Everything will be fine now, and the ABI will be a huge success because God isn’t finished with me. There is a reason I received that huge donation and was able to get the device. He wouldn’t have made that happen if it wasn’t going to work well for me. It is a miracle, and I really do feel so blessed.
Hey everyone. Finally time for me to update the blog. I apologize for not updating in several days, but it’s been a very busy couple of days. Well, I’ve got some very exciting news: Holly was released from the hospital on Wednesday! Well it seemed to take most of the day, but we were finally released around 7:30 that evening. I know she was extremely happy to be out of the hospital, but we still have to stay at the guest center until Saturday but should be tomorrow. But she had an appointment with her doctor this morning, at the clinic, and everything was going well. He said that she looked very good and nice with her makeup and clothes on. But it’s definitely wonderful to have her back to a real person and not a person in a gown, or in a hospital bed for that matter. At least I get to hold her at night. That is something I definitely missed in the last two weeks. Really, but we will be catching a flight out tomorrow morning at 11:50 AM and will not be getting back into Little Rock till later in the evening. I hope everything goes well with the weather in Arkansas. Quite bad right now. They are getting a lot of snow. Well this will probably be one of my last posts in the journal for a while, as I’m sure Holly will be updating it herself. I know she will be glad to get back to her computer and braille display. I look forward to keeping you guys updated and hope I did a good job, I know I haven’t updated as frequently as she probably would have, but I do my best. I know Holly would like me to say this once again, thank everyone for all their support and prayers. It is greatly appreciated and very helpful to all of us as a family. We try to stick together is a close-knit family network, and I know that it helps Holly to know that we love there for her. Well until next time, I hope you enjoyed everything I’ve updated you on, and it has been at least somewhat understandable with this voice recognition software. It doesn’t always get everything correct that I say, but hopefully you will get the gist of it. It takes much more time to go through and edit word by word and character by character, so I figure I’ll try to leave it as it is and hopefully you’ll get the gist of it. Everyone take care, and hopefully the next update will be from Arkansas our hometown. Thanks once again. Take care.
Hey everyone, I just wanted to update the blog and let you know how Holly is doing. A couple of days ago, she was able to be removed off the IV lines and now she has to have an antibiotic. They have her on a nine to lock for. This makes it much easier for her to get around, especially when she is not hooked up tonight
Or this evening too. At least you don’t want to start out. One of the doctors came in today, and said the Holly was looking extremely well. They are going to do a study next week by taking a scope, and looking at her vocal cords to see if they are functioning any better than they were post-surgery. I’m sorry, I meant pre-surgery. I always get those mixed up. Either way, they’re going to do a study on the vocal cords, to see if they are functioning any better than they were before surgery. If they find that she is able to swallow, they are going to possibly remove the trach. This would be exciting news for Holly. I know she will be thrilled when she finds this out. We have not told her yet, because you want to make sure from our regular doctors who come during the week, that this is going to be the case. But it looks like it will be. So hopefully the study will go well. I seem to be having a little bit of trouble with my speech dictation software, it’s making a lot of mistakes. I extremely apologize for that. I don’t know if I put this before, but Holly has been able to do a lot of walking, especially since they have been able to take her off the IV lines. She has walked completely around the nurses’ station, which is quite a trek for someone whoo just came out of surgery almost 2 weeks ago. She is recovering nicely. Well that’s about all I have to say for now, but I will keep you updated as to more information. Thanks so much for all your support and hopefully you find these updates interesting.
