Activation Day & First 5 Programs!

ACTIVATION DAY

Activation day went great! I went inside and my audiologist (Kristin) gave me a hearing test first, I couldn’t hear anything. Then she went and got my family and we all went into her office. First she put it on me and said that I would only hear beeping right now and to tell her if I could hear it. The first beep was so cool, I’ll never forget it. That was the moment when I knew that everything would be okay because it’s at least working. She went through all the beeping and I had to say yes if I heard it. Then the next step was to count how many beeps I could hear and to tell her. Then she did all the settings and then told us all to be quiet. She turned it on and LO AND BEHOLD, I could hear something while she was talking. It was overwhelming and I was trying to be strong while she was talking to me. It was so strange, it was full of beeping, buzzing and all sorts of sounds and I couldn’t quite hear voices, that’s something I didn’t expect and in all honesty, that part terrified me. When she finished that part up, I looked up at my family and they were all in tears and I started crying myself. Two and a half weeks with absolutely no hearing drove me crazy, I handled it better than I thought but I was ready to hear at least something and I got my wish that day. After that she had to test it out on various things. She rang the bell and it wasn’t too loud for me. She crumbled paper and it wasn’t loud but I got excited because it has been a very long time since I’ve heard that sound. She also clapped and did some other things and none of them were too loud for me. I was finished after that. Then, she went through all the parts of the processor and how to take care of it and all that good stuff. She asked while we were doing that, if I could tell the difference between her and my Mom and I said yes because the pitches are different between them and she said that was very very good since it was only the first day. She also explained the programs and that they were giving me 8 programs to work on when I was comfortable to go to the next program then I had to go see Dr. Peters. He said that everything looked good and that I was good to go on working out, roller coasters, and flying. I got to get a picture with the doctor that made this all possible and I will forever be grateful for Dr. Peters and Kristin. (I will remember to get a picture with her next time, I forgot with all the excitement!)

After that we left to head to the speech therapist, her name is Linda. I was so overwhelmed and everything sounded SO weird and I was scared that I didn’t really understand anything because every voice and noise sounded like beeping, dinging or some other sound and my brain at that point just didn’t understand what it was supposed to mean. Once we got to the speech therapist she asked how I was doing and did some testing. She did some sounds like eee, ahhh, sssss, shhh… and she would go through them with me then she would cover her mouth and I got every single one of them correct. I was like okay, well that’s weird… I didn’t think I’d be able to do that. She said it was good that I got all of them right. Then she did actual sentences and went through them and I had to pick out which one I thought she said and I again got everything right. She asked how I knew that was what she was saying and I kept telling her it was the “T” sound in that sentence and I just knew it was that one so that day it was the glorified “T” that saved the day haha. After that, she had told my Mom to try it with me and I felt so bad because at first, I couldn’t understand her.  Then she asked my sister, Tara, to try it and I got what she said right off the bat. I could tell my mom was sad so we tried it again and I finally got it right. Linda said that I was doing VERY WELL for the first day and that I just amazed her. I left the there feeling so much better. She showed me that each sound meant something so I have to teach myself what they mean. I said before that I didn’t think I was understanding anything at all and she showed me that wasn’t true. I left with my faith renewed and the confidence that I could do this. I have never been able to understand anything without looking at people’s lips so that was just so bittersweet that after all of this training in understanding, I wouldn’t have to work so hard to read people’s lips and understand what they’re saying.

We left for home that night after dinner and shopping. I took it off for the first part of the trip but towards the end I put it on to listen to the music and I could hear the guitar but it sounded like beeping. Some songs I liked but one song I absolutely could not stand. I wish I had written it down but I didn’t. After we dropped Tara off, I got in the front and on the way home I heard and understood my Dad and we had a full conversation in the Dark. That was another first for me and I knew that my adventure was just starting.

PROGRAM 2

The next morning I got up and started out the day with channel one but then I decided to change it to two. I was hearing all sorts of sounds. I ate my breakfast and I could hear myself chewing and I was like wow, it was cool but at the same time just SO weird. After that I went outside and let Kyra out with me and I was overwhelmed with hearing all the dogs barking. Marley sounded like a police siren with the whining bark that she does. Maddie and Kyra both sounded like little bitty robot dogs. After that, I walked inside and I heard this sound every time I would walk and I found out that it was me dragging my feet. Gosh, now I understand why Tara gets onto me about dragging my feet, that sound was very annoying, it’s okay Tara, you don’t have to get onto me anymore now! I hung out around the house by myself for most of that day. I was looking through all of my CI stuff and discovered that I don’t like the sound of paper. It wasn’t too loud or anything, it just sounded so weird, I don’t even know how to explain it. After that I tried to watch some TV and ended up having to turn the sound of the TV off. I didn’t like the way it sounded, it just sounded like garbled robot sounds or something. They said that it would take a while to like hearing technology. I went with Tara out to her classroom that night, and as we were leaving I heard a beep and I asked Tara what it was and she said it was a bird! Wow! It was the first time to at least hear a bird even if it was a beep. I also went crazy when I heard running water for the first time when my mom was doing dishes. I don’t understand why people think it’s a soothing sound, but maybe soon I will. I still wasn’t hearing actual voices at this point yet. The next day I went to my Memaw and Pepaw’s house to swim. I surprised Memaw because I could her say “sh” when she said She. I also ASBOLUTELY did not like listening to one of Gavin’s toys, did not like that toy! I went back to work on Monday with Program 2. I could hear one of the guys next to my office roll up his maps, I’m telling you, I don’t like paper right now haha but it was interesting because I’ve never been able to hear him do that. I also was able to figure out if someone was walking down the hall or not at work. I still couldn’t hear actual voices at this point yet.

PROGRAM 3

I finally can hear a little bit of voices, it still didn’t sound “normal” but I was happy to finally have it change a little bit. As I was leaving, I had to open the gate so I went outside and I could hear something and I stopped and waited until I figured it out…. It was the tree leaves rustling! So Cool, another first for me!!! I went to help Tara in her classroom last week and as I was walking up to her classroom I could hear people talking but I didn’t know where but when I got closer it got louder and louder and as I got there, my 3^rd grade teacher Mrs. Hart was in there talking to Tara about me. I was happy to see her. Before with my hearing aid, I wasn’t able to tell the difference if it was getting louder or not. I was either able to hear them or not. We cut out things that were laminated and I could tell the difference between paper and plastic, still didn’t like the sound of that either.  We went to Summer Mummers and I kept it on. It sounded like a whole bunch of people together and they were mumbling and garbling. Weird experience, but interesting. I also got to hear rain for the first time with Program 3, I don’t know exactly how to explain it, but I know it will get better. Water still sounds like a bunch of static and birds still sound like beeps but everything else seems to be getting better with every program.

PROGRAM 4

I switched to program 4 on Sunday (9/8) while I was having my birthday dinner with family. It’s a blessing that I got it activated before my birthday. Anyway, that night I was listening to everything, the birds sounded like different pitches of beeps when they were chirping, so I guess it was better than a regular beep. Also that night, my dad had his head turned and he said “Hey Mallory” and I looked at my mom and I said slowly, “Did he just say Hey Mallory?” We all got very excited about that. As I’m writing this, I have had so many firsts since it got activated and I’m not even finished with tuning and mapping it, it’s only the first mapping and tuning. On my birthday, I got a 100% on my speech and understanding while working with mom. I went from not understanding her behind a piece of paper to understanding her WAY better so that was a drastic improvement. I need to start doing this with everyone I know. At work I was doing the dry write out and it made a sound and I was shocked and said “Whoa!” and I turned around and asked Brandi, “does this make a sound?” And she was looking at me laughing and said “yes, did you hear it?” I said “yes, I never even knew this made a sound.” She said “that’s so cool!” Last night I came to my parents’ house, the power was out, and there was this aggravating sound and so I finally said what is that?! My mom listened and said is it Kyra chewing on her bone? I watched Kyra and listened and said yes it is. It got so aggravating I had to take it off haha. I was so tired by the end of the day. I get so tired so fast these days from trying to listen to everything and figuring it out. I’m doing good though, I don’t take it off at all during the day and they said that I would probably need breaks from it, but I only take it off in the evenings if I do. I got my other processor from FedEx so I was excited to start Program 5 the next day.

PROGRAM 5

Today, I have program 5 on and my processor is a sand color and looks neat. The voices sound better on this program, not perfect yet, but better. I’ve been at work so I haven’t heard anything “new” yet except I noticed that the keyboard when I type doesn’t annoy me anymore and I didn’t realize that it annoyed me until today, but I will keep writing it up as I notice differences. I did notice at lunch that my cousins sound better to me too and I catch most of what they say when they talk to me, they don’t sound too much like midget robots anymore. I will never get tired of them calling me robot ear (Thanks to Micah), it makes me laugh so much, they’re so cute.

The BIG Day!

Hey guys,

I'm pretty dizzy writing this to y'all but I will try to catch you guys up.

We left on June 11th for Dallas to go to my pre-op appointment. Mom and I were surprised and excited to find out that instead of waiting 4 weeks to get activated, they wanted to go ahead and get me activated in 2 weeks, which is now about a week away. June 29th is activation day!!

For the rest of the 11th and most of the 12th, I had alone time with my mom and we went shopping and saw Snow White and the Huntsmen. I had a blast! My Dad, Tara, Memaw and Pepaw came on the 12th and we had some fun shopping and eating dinner with them. I have the most amazing family ever.

The next morning was the big day! I was very nervous and I could tell everyone else was too. The surgery was delayed about 2 hours so it was a very nerve racking long wait for all of us. Then the nurse finally called me back to prepare me for surgery.

Then I started feeling pretty loopy starting right here....

The last thing I remember is them giving me a big shot of something and moving to the operating room bed and them straping me down. Then I woke up in a room and all I could say was that my ears were ringing like crazy and they gave me medicine about three times before they said I was okay to move to another room. They gave me apple juice and graham crackers and I was happy with that because I was hungry. I was excited to see my Dad and Tara come around the corner looking for me. I was very happy to finally be out and to see my family.

Then the next thing I know the doctor comes in and checks on me and says that I was ready to go and that they put on my cochlear implant on in the operating room and he said it worked! I asked him about the ringing and if it was normal, and he said it's very normal and he said that it will probally last until activation day if not longer. He said that i'm used to hearing something so my ears are confused and are trying to hear.

I"m going to skip some things now because i'm very dizzy and my head is starting to hurt. I will give more things in detail in another post. In short words, i'm doing okay. I get sick to my stomach because of the dizziness and the ringing in my ears. The ringing feels like a music box has been opened in my ears and it won't stop. Yesterday, I felt car sick in the car but Mom says it's because of the ringing in my ears. I still don't feel comfortable driving. I sleep a lot but starting today i'm trying to stay up and fight the dizziness and ringing, it's hard but I can do it. I have caught myself trying to find my hearing aid and I have to remind myself that it's gone. It hasn't really hit me yet because it feels like i'm just sick. Tomorrow, I return to the real world and we will see how it goes.

1 WEEK

It's just about one week until my surgery for the CI. I am feeling the nervousness for sure, I am eating everything in sight haha! :( I am excited for the process to finally be here though. I am not nervous at all about the surgery itself, i'm more nervous about after and re-learning everything, but I am excited to hear new sounds that i've never heard before. There have been some misunderstandings and questions that I would like to clarify for you guys.

• I will NOT magically be able to hear as soon as the surgery is over. After surgery, I will be completely deaf with absolutely NO hearing for 4 weeks.
• Once it is activated (4 weeks later when everything is healed), I will be able to "hear" something. It won't be the same as what I hear now. It's going to be completely brand new to me. At first, it is going to sound a little computer like or like alvin and the chipmunks or something, I won't know. It's different for everyone. I will go back to Dallas every couple of weeks for them to tune it to a different "channel" every time and "map" it out until it is perfect. The time frame is different for everyone, but it can take up to a year until I am hearing perfectly.
• With that said, just because I can "hear" doesn't mean I will be able to "understand" what I am hearing. My ear will kind of be like a baby, and it is having to re-learn every sound that I am hearing because it is going to sound different. When they turn it on, I won't be able to understand everything like I can now.
• The first few months will be a roller coaster of emotions for me and everyone around me because i'm trying to match what voices go to what face, what sounds belong to what, and I will be hearing new sounds that i've never heard before. A guy told my mom that his mother (who got a CI a few years ago) broke down in tears when she found out that she was hearing a locust. She said that it was a beautiful sound, annoying, but beautiful. I've never heard that sound before either, so i'm excited for this new adventure.
• I have to be prepared for noise overload when I first get it turned on. A guy that has CI's told me that he could only handle two hours of having it on at a time because he had to process everything that he was hearing.
• My Memaw mentioned to me today about me never being able to hear a cooing baby and I am SO excited because I have a new baby cousin coming in December and I will be able to hear him/her coo.

If y'all have anymore questions, feel free to contact me. I really don't mind talking about it! Thank y'all again for the amazing support and the prayers. You guys are awesome! <3

FINAL DATE!

I (My Mom) got a call today from Dallas Ear and we set our final surgery date to be on

JUNE 13TH 2012!!!

I am estatic and RELIEVED to finally find out a date so now I can keep it in mind instead of always just stressing and wondering. I'm glad the DARS papers finally went through. Now I can focus on the surgery date and prepare myself for surgery. I'm still very nervous but super excited for the adventure ahead!

Again, thank you all for your support!!

Update (part 2)

I know I said I would update a couple of weeks ago... whoops.

The night of Gampie's funeral, I noticed that Maddie was acting weird by not eating and she was throwing up. I waited til morning to see if she just ate something weird, but she was still refusing to eat so I took her to the vet. The vet made her take a test to see if she has Parvo and it turns out, the test came out positive for Parvo. I cried in the vet's office while they gave her meds and an IV to make her stop throwing up and it gave her a day's worth of water. They wanted me to keep her in there, but it was very expensive and I thought she would be more comfortable at home. I took her home and I babied her back to health. I really don't think it was Parvo, I think it was some sort of weird dog flu or something. I took her to the vet on friday and she was back to eating soft foods by Sunday. I force fed her pedialyte every hour, day and night until she improved. It was hard to see her like that, but i'm glad she's okay. She ate soft food starting on Sunday then she went back to hard food by Friday. Here is a picture of my happy puppy now :)

A couple of weeks ago, Ami, Zach and I headed to Dallas for Warrior Dash. It was a blast! I didn't do as good as I was hoping, but I did good considering I had several asthma attacks during it. (lol) The water that we had to go through was so cold and that triggered a bad attack! It was fun though and this one was A LOT harder than the one that I ran last year in Dallas and the year before that in Austin. The obstacles were a lot harder and this one was a lot longer too. It was awesome!! Here are a few pictures of our weekend.

We also went rock climbing on Sunday. It was fun, I can't wait to get on the real rocks this summer! We were really sore after we finished, but dang, that's a good work out too, especially for your arms and legs!

I went to my meeting with DARS this last Friday and everything went okay. I still have to wait a couple more weeks for them to send the paperwork to the "El Paso" DARS then they will send the paperwork to the Dallas DARS then they should let the hospital know that they can schedule my surgery. It's really frustrating because I know if they had done everything right, I would have already had my surgery by now and that I would already be in the recovery process. I know everything happens for a reason and I will get it soon hopefully! At this point, I think the actual surgery will be in June.

Update (part 1)

Hello! It's been a crazy month and a half but I will catch you guys up.

I went to finish up my evaluations for the Cochlear Implant on March 16th. They did a balance test which was very weird. They had to put a video camera on one of my eyes and look at the movement of my eyes while they put hot and cold air in each of my ears and water in one of my ears. I also had to move in different positions too. Strangest test i've ever done in my life lol but it wasn't bad.

After that, I went to my therapist that I will be seeing every two weeks after surgery and the activation. She was very nice and helpful in my understanding of what I will be able to hear.. hopefully. She did some testing to see where I am in speaking and listening to people without lip reading. She said that I do very well in speaking and that she was very impressed with me. I didn't do very good on the listening part because I depend on lip reading now. She said that I will hopefully be able to hear almost as good as a "normal" person does and showed me the chart of where I am hearing now where the Cochlear implant "can" help me hear and it will be a dramatic difference but I do have to work hard to get there. She made me that much more excited and not so much nervous.

Then, we went to the psychologist. She pretty much just asked questions about my life and where I am. She had to make sure that I was able to handle the stress and changes that I will be going through once I get it. She also had to make sure that I had support behind me to help me through it. She said that I was a perfect canidate and that she had no doubt that I would benefit from it.

I passed all the evaluations and testing. Right now, we are STILL waiting on approval from the state (DARS). I am hoping to hear from them this week. We ended up having to call the supervisor of DARS to see what was the hold up and it was just a big mess. It's very stressful and i'm so ready to just KNOW and plus it's getting in the way of school because I am trying to figure out what summer classes to take compared to the fall, but I think we are finally getting closer to getting a surgery date. I will keep you guys updated and hopefully the mess will be sorted out SOON! Here are a few pictures of our trip and you can kind of see what the hospital looks like:

The morning after we came home from Dallas (March 17th), I got the sad news that my great-grandfather, Gampie, passed away. He was such an amazing man with a great and HUGE heart who could just make anyone smile even if he didn't know you. He was a successful man and I only hope to become a great person like he was. I'm glad that he is at peace and he is smiling down and watching over us with Gammie. I do still get sad when I realize he isn't here anymore and I cry over the smallest things that remind me of him, but mostly I remember the good times with him and i'm so blessed to be able to know my great grandfather for as long as I have. Here is a picture of us:

Well I think that's enough updates for one blog post. I will update the rest about Maddie and Warrior Dash tomorrow on another post! And again, I thank all of you guys for the wonderful support that I have gotten from you and all the prayers, thoughts, texts, emails and facebook posts that I have got from from you guys. All of you guys are seriously the best!!

BIG change and adventure coming my way

I just wanted to keep you all updated. I recently found out that my hearing is declining rapidly and I will not be able to hear out of hearing aids in the next couple of years. In spite of this information, I wanted to check out Cochlear Implants because I do want to hear at least SOMETHING and didn't ever want to even consider losing all of my hearing. This information leads to my next adventure in life.

 

 

 

Last Thursday, I went to my first appointment to the Dallas Ear Insistute in Dallas, Texas. (Thanks again Mom and Dad for taking me!:). They are the best hospital that specializes in Cochlear Implants. The hospital is amazing. The staff there is really nice and Dr. Peters is very positive and reassuring. They told me that I am a canidate and that I will LOVE my implants and wonder why I never got them sooner. They have absolutely no doubt that I will be able to hear MUCH better than I do with hearing aids and be able to hear sounds that I've never been able to hear before like birds that y'all say are so pretty to hear and the water dripping out of the faucet and some of the quiet and high pitched noises that I was never able to hear before. 

 

The surgery which will be done on the side of my head above my ear will most likely be done in May or June. The doctor said that he wants to do it in my better ear that I can hear with my hearing aid with, which means NO hearing aids or hearing at all for at least 4 weeks if not more. I won't be hearing my kind of "normal" for quite some time. I will be hearing anything and everything between robots and alvin and the chipmunks for the first few months. I'm very excited for the experience and the opportunity to be able to hear better than i've ever heard before because I've noticed that my hearing has gone down rapidly the last two years with my hearing aids. It will be a long hard road to learn and teach myself how to hear again and get used to the strange noises that i've never heard before, but I know I can do it with the HUGE support network I have behind me. I am honestly kind of scared to not have my hearing aids or the option of having them anymore after this but I know it will be worth it to hear the little sounds that make life even more enjoyable. I am also nervous about the recovery and the hard road of getting it back to normal and teaching myself how to hear again and therapy and things like that, but like I said, I have a huge support network behind me and I know that I can do it. I will be updating my blog on this information as a journal and keeping record of my experiences for my benefit as well as to keep my family and friends and you readers out there informed on how i'm feeling at the moment.

 

My next appointment is in March and it is a series of appointments to make sure that I can handle getting the implant which I have no doubt that I will pass and from there I will know more about when my surgery will be and things that I can do to make the recovery as easy as possible.

 

If y'all have any questions feel free to ask me!