So we had Brianna's 4th mapping session. I am amazed with her progress. I can tell how well she is doing when we are home and I am talking to her, but I had no idea how well she was really doing. Her audiogram showed that she is about 25-30 Db with a dip down to 40Db at 3000-6000Hz for each ear. Her word recognition was measured at about 90% with both implants. She is just amazing. Michelle the audiologist raised her levels at the 3000-6000 point and hopefully we can get them to even out. So the next appt is mid August and we will see how she is doing there.
Other than that, there isn't much to tell you all about. School is out for Brianna, and next year we are going to try no FM system, no student aid and only 1 session a week with the hearing itinerant. Brianna is a bright little girl, and hopefully we can see how well she is doing on her own. Of course if she needs more assistance that will be provided to her.
Brianna was able to talk to me on the phone for the first time ever. Well, at least the first time ever really hearing what I was saying. She heard everything I was saying, or at least enough to piece together my sentences.
She is just amazing. This whole experience has made me a stronger person, but Brianna has always been strong. This is just her. She is finally where she was meant to be. Her attitude has changed dramatically. She no longer secludes herself from her siblings and friends. She gets right out there and plays with everyone. She isn't moody and stubborn all the time anymore. The stress from not hearing and having to struggle through every day was weighing on her I am sure. But still, she was a cranky-pants. She is becoming the Brianna that I knew was always there.
Let me tell you, in case anyone needs a tip from me...earmolds. Brianna has had a set of earmolds for about 2 1/2 weeks now, and they are working wonderfully. They hold the BTE speech processor on perfectly. We haven't had them fall off once since she got them. It took about 2 weeks for them to come in, but it was worth the wait. So any parents out there that are having problems keeping the BTE processors on the little one's ears, look into earmolds. Brianna was used to them from the BTE hearing aid, so it was a very easy transition, but I do remember when she first got them with the hearing aid, she hated it. But she got used to it, and they do their job. :)
Showing posts with label Cochlear Implant. Show all posts
Showing posts with label Cochlear Implant. Show all posts
Tuesday, July 1, 2008
Monday, June 9, 2008
Audiogram Update
So when we went to the 3rd activation, Michelle put Brianna in a booth to see how she is doing. Brianna just amazes me. She is at about 45dB in both ears straight across! Wow, before the implant she was at 90-95, and there were dips and dives. She has about 30% word recognition in the right ear (the one that had the hearing aid before) and 0% in the left. But she is hearing sound in the left ear, and by-golly, that's good enough for me. So in three weeks, she has come leaps and bounds. It just amazes me. So, she is a bit ahead of where we dared even hope before the surgery, and it's only getting better.
Sorry to all of you looking for her activation video. My home computer S&*T the bed, and I am sure most of you can understand, after working on a computer all darn day, I just don't feel like fixing mine quite yet. Too much else going on. I love summer. This weekend was Brianna's dance recital. For not hearing much of the music (she told me she could feel it in her legs), she did great. She performed at Shea's Performing Arts Center. The same place I have sung on stage in the past. It's just a beautiful place. They have restored some of it. It takes my breath away. I am going to see Wicked there in July. Fun Fun Fun!
The garden is blooming. The air is warming and the sun is shining. I love summertime. I love it so much, I don't know why I live here in Buffalo. Oh well. Maybe someday I can get a bit further south. I appreciate the comments and views. It really lets me know that I still have every one's support! Thank you!
Sorry to all of you looking for her activation video. My home computer S&*T the bed, and I am sure most of you can understand, after working on a computer all darn day, I just don't feel like fixing mine quite yet. Too much else going on. I love summer. This weekend was Brianna's dance recital. For not hearing much of the music (she told me she could feel it in her legs), she did great. She performed at Shea's Performing Arts Center. The same place I have sung on stage in the past. It's just a beautiful place. They have restored some of it. It takes my breath away. I am going to see Wicked there in July. Fun Fun Fun!
The garden is blooming. The air is warming and the sun is shining. I love summertime. I love it so much, I don't know why I live here in Buffalo. Oh well. Maybe someday I can get a bit further south. I appreciate the comments and views. It really lets me know that I still have every one's support! Thank you!
Monday, June 2, 2008
Tomorrow is the 3rd mapping session...
So it has been a while. We are doing quite well. Brianna is doing wonderfully. She is hearing her name quite well. She tells me that people talking sounds "normal", but I don't really know what that means. She understands everything I say when she is looking at me, and she gets simple words and phrases when she is not looking at me. So I know it is working so far.
At tomorrow's appointment I think they are going to put her in a booth. Just to see where she is I guess. We also ordered ear molds to help keep the processors on her head. She is still too sensitive to wear the double-sided tape (but it really worked other than the irritation)! So the ear molds should be there tomorrow. They are blue and purple. My daughter is not afraid of color. If you saw my house, you would understand how different she and I are. Beige walls, off white trim...BORING! Oh well.
So, we still haven't had any "What's that?" moments. Maybe she is just not the type to ask. I tend to catch her investigating sounds, like the rain stick. My kids have a rain stick, you know, the one where it sounds like rain when you tip it, and the slower tipping makes a different sound than the faster tipping. Well, she played with this thing for a good 15 minutes the other day. I asked her what she was hearing, or if she had any questions and she said that it "sounds like rain". I wonder if she has really ever heard rain. She sleeps through the horrible, wake you in the middle of the night thunder storms. But without really knowing when she lost her hearing, it is hard to say what she has and has not heard before.
She is taking it all in stride. She always has. This Thursday she is going to the zoo. That should be a lot of fun for her. I will be at work, but I can't wait to get the recap of the smells and hopefully sounds that she experiences.
Last weekend (Memorial weekend) we got to see my family. We all go down to Maryland for the weekend. Everyone was glad to see Brianna for themselves I think. It's one thing to be told that someone is ok, it's another to see it for yourself. I do have to tell you what "Mother of the year" did. (Thank you, thank you, hold your applause please). I was getting the kids ready to go in the hot tub, and so first it's take off the shoes and then put on the bathing suits. Make sure you wear your shoes out to the tub so you can put them on afterwards. And don't forget the towels! What did I forget? Oh yes, to have Brianna take off her processors. So about 15 minutes into the splash-fest, Brianna hysterically screams "My processors!" and jumps out of the tub. Well, they shut themselves off, and that's when she noticed that they were on her head still. Of course she is soaked. I mean, she was going under the water, splashing, there were 5+ kids in the hot tub, water everywhere. And you know what? The darn things are still working fine. I removed the batteries, and no dampness or anything in there. They turned off because the batteries finally died in the right side. (We got 5 days off 1 set of batteries!). So I walked back to my rental house and got the rechargeable batteries. Put them in, and wha-la...they worked. Who knew that these are forgetful parent proof as well?
So all is well here. Hope you are all well, and I will keep updating!
At tomorrow's appointment I think they are going to put her in a booth. Just to see where she is I guess. We also ordered ear molds to help keep the processors on her head. She is still too sensitive to wear the double-sided tape (but it really worked other than the irritation)! So the ear molds should be there tomorrow. They are blue and purple. My daughter is not afraid of color. If you saw my house, you would understand how different she and I are. Beige walls, off white trim...BORING! Oh well.
So, we still haven't had any "What's that?" moments. Maybe she is just not the type to ask. I tend to catch her investigating sounds, like the rain stick. My kids have a rain stick, you know, the one where it sounds like rain when you tip it, and the slower tipping makes a different sound than the faster tipping. Well, she played with this thing for a good 15 minutes the other day. I asked her what she was hearing, or if she had any questions and she said that it "sounds like rain". I wonder if she has really ever heard rain. She sleeps through the horrible, wake you in the middle of the night thunder storms. But without really knowing when she lost her hearing, it is hard to say what she has and has not heard before.
She is taking it all in stride. She always has. This Thursday she is going to the zoo. That should be a lot of fun for her. I will be at work, but I can't wait to get the recap of the smells and hopefully sounds that she experiences.
Last weekend (Memorial weekend) we got to see my family. We all go down to Maryland for the weekend. Everyone was glad to see Brianna for themselves I think. It's one thing to be told that someone is ok, it's another to see it for yourself. I do have to tell you what "Mother of the year" did. (Thank you, thank you, hold your applause please). I was getting the kids ready to go in the hot tub, and so first it's take off the shoes and then put on the bathing suits. Make sure you wear your shoes out to the tub so you can put them on afterwards. And don't forget the towels! What did I forget? Oh yes, to have Brianna take off her processors. So about 15 minutes into the splash-fest, Brianna hysterically screams "My processors!" and jumps out of the tub. Well, they shut themselves off, and that's when she noticed that they were on her head still. Of course she is soaked. I mean, she was going under the water, splashing, there were 5+ kids in the hot tub, water everywhere. And you know what? The darn things are still working fine. I removed the batteries, and no dampness or anything in there. They turned off because the batteries finally died in the right side. (We got 5 days off 1 set of batteries!). So I walked back to my rental house and got the rechargeable batteries. Put them in, and wha-la...they worked. Who knew that these are forgetful parent proof as well?
So all is well here. Hope you are all well, and I will keep updating!
Wednesday, May 21, 2008
1 Day Post Activation...
So this morning was easy. Brianna was eager to put the speech processors on. She is really good at putting the right one on. That was the side with the hearing aid, so she has had practice. One thing we are having a problem with is keeping the BTEs on her ear. The double sided tape isn't working yet because it bothers her incision. So I used the snug fit ear hook. It hooks around the top and bottom of the ear. She said that was bothering her too by the end of the school day. So I have come up with a solution until the incision stops bothering her...a fabric headband. I put the headband behind the processor, over the cable. So now if it falls off, at least it won't fall to the ground. Funny story....(well funny now anyway.)
So I dropped the girls off at daycare. I showed Miss Anna (the daycare provider) how to attach the processor to her head. I left and headed off to work. About 9am, I received a phone call from an upset student aid (Mrs. Schurr). She is the wonderful woman who I am giving credit for Brianna's continued success at school during this time of total deafness. Anyway, she proceeds to tell me a story of a beautiful little girl, who received her bilateral cochlear implant processors yesterday, and for some reason, this little girl decided to jump off the school bus into a puddle. Now, when this jump finished, in what was, I am sure a wonderful landing, the processors flew off her head and into a rain puddle. Obviously upset, the wonderful little girl picks up her processors and runs into the school to find her student aid. Upon placing the processors on her head, they are not working. A flashing H6 is displayed on the LED panel. In disbelief, the student aid calls this lively little girl's mother. That's where I come in. Now, I must tell you, hearing this, my heart slowed. I don't even think I was breathing, until the H6 part. I haven't memorized all the error codes, but this is one that I know. H6 means that the speech processors are on the wrong ears. I had Mrs. Schurr and Brianna switch them. Sigh of relief, they work now. My goodness, can't my little girl pretend she isn't a 7 year old for just a few days! Does she really have to test the "water resistance" of the processors after only having them for 1/2 a day?!?!? So, they are in the drying kit right now, but all seems well. I can laugh about it now. So, we have learned 2 valuable lessons here: 1. The speech processors will survive a fall to a puddle on the ground, and 2. Brianna is Brianna. :)
As far as progress today, she said that everyone sounds a bit more clear. Children sound like they are chewing something while talking, and adult women sound like they have a sore throat. We played our game where I cover my mouth and she repeats. She gets her name right away. I did fire truck, and she got fire right, but couldn't get the 2nd word. I did I Love You again, and she got that. And I did orange, which she also got correct. She was so proud. She used her 2nd program today, and didn't complain about it, so that's good I think. Tomorrow we go for another mapping. We will get her beige processors then as well. Now we will have a backup. Brianna really doesn't want those ones, so I guess they will really be spares and for emergency only.
I really want to thank you all for your continued support. This is so much more amazing that I ever imagined it to be. She hasn't said "what's that?" yet to me, but everything else she does is just wonderful. I am amazed. Brianna has always amazed me, this I am sure will never end. She is great!
So I dropped the girls off at daycare. I showed Miss Anna (the daycare provider) how to attach the processor to her head. I left and headed off to work. About 9am, I received a phone call from an upset student aid (Mrs. Schurr). She is the wonderful woman who I am giving credit for Brianna's continued success at school during this time of total deafness. Anyway, she proceeds to tell me a story of a beautiful little girl, who received her bilateral cochlear implant processors yesterday, and for some reason, this little girl decided to jump off the school bus into a puddle. Now, when this jump finished, in what was, I am sure a wonderful landing, the processors flew off her head and into a rain puddle. Obviously upset, the wonderful little girl picks up her processors and runs into the school to find her student aid. Upon placing the processors on her head, they are not working. A flashing H6 is displayed on the LED panel. In disbelief, the student aid calls this lively little girl's mother. That's where I come in. Now, I must tell you, hearing this, my heart slowed. I don't even think I was breathing, until the H6 part. I haven't memorized all the error codes, but this is one that I know. H6 means that the speech processors are on the wrong ears. I had Mrs. Schurr and Brianna switch them. Sigh of relief, they work now. My goodness, can't my little girl pretend she isn't a 7 year old for just a few days! Does she really have to test the "water resistance" of the processors after only having them for 1/2 a day?!?!? So, they are in the drying kit right now, but all seems well. I can laugh about it now. So, we have learned 2 valuable lessons here: 1. The speech processors will survive a fall to a puddle on the ground, and 2. Brianna is Brianna. :)
As far as progress today, she said that everyone sounds a bit more clear. Children sound like they are chewing something while talking, and adult women sound like they have a sore throat. We played our game where I cover my mouth and she repeats. She gets her name right away. I did fire truck, and she got fire right, but couldn't get the 2nd word. I did I Love You again, and she got that. And I did orange, which she also got correct. She was so proud. She used her 2nd program today, and didn't complain about it, so that's good I think. Tomorrow we go for another mapping. We will get her beige processors then as well. Now we will have a backup. Brianna really doesn't want those ones, so I guess they will really be spares and for emergency only.
I really want to thank you all for your continued support. This is so much more amazing that I ever imagined it to be. She hasn't said "what's that?" yet to me, but everything else she does is just wonderful. I am amazed. Brianna has always amazed me, this I am sure will never end. She is great!
Tuesday, May 20, 2008
And Brianna Hears!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Activation went great today! We got there at 1:40 (I got lost on the way!) and we were finished at about 3:30. Not too shabby. Here's what happened...
Right Ear:
- Michelle started with electrode 22. About 4 minutes of different beeps, and nothing. She moved to electrode 20, and about 5 beeps later Brianna raised her hand. There was clapping and many smiles!
- Many, many beeps later, Michelle turned the one side on. Brianna was live, and frankly just as "Brianna" as ever. She didn't have the "jolt" of sound like I have read about. She said that everything sounded like beeps. She heard us talking, but we were talking in beeps. She described them as high pitched beeps.
Now for the Left: (the bad side)
- Lots of beeps, and Brianna started raising her hand pretty quickly. A couple times she saw Michelle press the button on the PC, and raised her hand early. So, the left ear is kind of a guess I think. We couldn't tell if she was just raising her hand or if she was really hearing. The left and right program are pretty similar.
- Michelle turned on the left side. Now we got the jolt. She said that it hurt her head. But the pain went away quickly. She kept saying that everything sounded like beeps.
So we left. Things weren't great, but they were amazing all the same. So in the car, I turned on the Disney CD and first thing Brianna said was "I hear music". Not beeps! I turned down the radio and she noticed that as well. "The music stopped." I turned it back on, I was done testing her for now.
I dropped off Brianna and my parents and went to get the other kids from school. When we all got home, I called Brianna's name and she turned around. She said "I heard you say Brianna!" I asked her if she wanted to play a game. Lets see what she can do with these new ears! So I covered up my mouth with a book, and told her to repeat what I said. Her answers are the the parenthesis.
1. Brianna (Brianna)
2. I love you. (I love you)
3. Sponge Bob (Sponge Bob)
4. Hippopotamus (Hippo-what?)
After that she was done playing, but OH MY GOD! My baby can hear! I asked her what I sounded like. She said my voice sounds like mickey mouse with a sore throat. Everyone sounds the same she said. But who cares, MY BABY HEARS!
So tonight we were getting things put away. She received so much! I haven't gone through it all, just read the manual and watched the DVD. We put the processors in the drying kit and Brianna unwillingly went to bed. She wasn't tired, and actually quite upset that she had to take off the processors. But she understands. So tomorrow we try the disposable batteries. I think this weekend we will do the rechargeable batteries to see how long they last.
I am so happy, and I know you all are as well. I do have video, but I am way to exhausted to do it tonight. I have editing to do, I am sure you all don't want to listen to the 40 minutes of beeps! Thank you all for the prayers and well wishes. We appreciate it all.
Right Ear:
- Michelle started with electrode 22. About 4 minutes of different beeps, and nothing. She moved to electrode 20, and about 5 beeps later Brianna raised her hand. There was clapping and many smiles!
- Many, many beeps later, Michelle turned the one side on. Brianna was live, and frankly just as "Brianna" as ever. She didn't have the "jolt" of sound like I have read about. She said that everything sounded like beeps. She heard us talking, but we were talking in beeps. She described them as high pitched beeps.
Now for the Left: (the bad side)
- Lots of beeps, and Brianna started raising her hand pretty quickly. A couple times she saw Michelle press the button on the PC, and raised her hand early. So, the left ear is kind of a guess I think. We couldn't tell if she was just raising her hand or if she was really hearing. The left and right program are pretty similar.
- Michelle turned on the left side. Now we got the jolt. She said that it hurt her head. But the pain went away quickly. She kept saying that everything sounded like beeps.
So we left. Things weren't great, but they were amazing all the same. So in the car, I turned on the Disney CD and first thing Brianna said was "I hear music". Not beeps! I turned down the radio and she noticed that as well. "The music stopped." I turned it back on, I was done testing her for now.
I dropped off Brianna and my parents and went to get the other kids from school. When we all got home, I called Brianna's name and she turned around. She said "I heard you say Brianna!" I asked her if she wanted to play a game. Lets see what she can do with these new ears! So I covered up my mouth with a book, and told her to repeat what I said. Her answers are the the parenthesis.
1. Brianna (Brianna)
2. I love you. (I love you)
3. Sponge Bob (Sponge Bob)
4. Hippopotamus (Hippo-what?)
After that she was done playing, but OH MY GOD! My baby can hear! I asked her what I sounded like. She said my voice sounds like mickey mouse with a sore throat. Everyone sounds the same she said. But who cares, MY BABY HEARS!
So tonight we were getting things put away. She received so much! I haven't gone through it all, just read the manual and watched the DVD. We put the processors in the drying kit and Brianna unwillingly went to bed. She wasn't tired, and actually quite upset that she had to take off the processors. But she understands. So tomorrow we try the disposable batteries. I think this weekend we will do the rechargeable batteries to see how long they last.
I am so happy, and I know you all are as well. I do have video, but I am way to exhausted to do it tonight. I have editing to do, I am sure you all don't want to listen to the 40 minutes of beeps! Thank you all for the prayers and well wishes. We appreciate it all.
Monday, May 19, 2008
Tomorrow is Activation!
So tomorrow is Brianna's activation day. I have the camcorder battery charging. I have to stop by Best Buy and get a mini-dvd before her appointment tomorrow. But other than that, we are on our way.
I think I have had all my questions answered, and despite every one's advice, I am still really hoping for that miracle moment. I know that either way, this is the first small step into a wonderful world for Brianna. I am so excited about all the "What's that?" moments, and hopefully her understanding some sort of sound. Even if it's buzzing or beeping or anything.
How amazing is it that we have come so far. Even though we as a family are new to hearing loss, and are privileged to have the benefit of existing technology, I can still appreciate the great strides that have taken place. Who would have ever thought that a beautiful little girl would be given the chance to possibly hear the things that she hasn't in so very long. I want her to hear me say "I love you". She reads my lips, or I sign it to her now, but that is the moment I am craving. You all know it. I know most of you have either been there, or are in the process of going there.
These past few months have been so dramatic, so tiring and so darn rewarding. I can't wait to update you all on her big day. This post is typed in PINK, and that's because her processors are pink. Brianna is a typical girly-girl, and that's the color she wanted. So that's the color she gets! She told me today that she absolutely MUST wear the pink ones home. And she has her outfit ready to go, so that she matches just right. I tell you, my beautiful daughter is just so darn strong. I can't imagine what I would be like in her shoes. Locked in a room somewhere just wallowing in self-pity I am sure. I don't know where she gets it from, but she is one tough cookie. So, here's to Brianna, becoming fully "Bionic" on May 20th, 2008. I LOVE YOU!
I think I have had all my questions answered, and despite every one's advice, I am still really hoping for that miracle moment. I know that either way, this is the first small step into a wonderful world for Brianna. I am so excited about all the "What's that?" moments, and hopefully her understanding some sort of sound. Even if it's buzzing or beeping or anything.
How amazing is it that we have come so far. Even though we as a family are new to hearing loss, and are privileged to have the benefit of existing technology, I can still appreciate the great strides that have taken place. Who would have ever thought that a beautiful little girl would be given the chance to possibly hear the things that she hasn't in so very long. I want her to hear me say "I love you". She reads my lips, or I sign it to her now, but that is the moment I am craving. You all know it. I know most of you have either been there, or are in the process of going there.
These past few months have been so dramatic, so tiring and so darn rewarding. I can't wait to update you all on her big day. This post is typed in PINK, and that's because her processors are pink. Brianna is a typical girly-girl, and that's the color she wanted. So that's the color she gets! She told me today that she absolutely MUST wear the pink ones home. And she has her outfit ready to go, so that she matches just right. I tell you, my beautiful daughter is just so darn strong. I can't imagine what I would be like in her shoes. Locked in a room somewhere just wallowing in self-pity I am sure. I don't know where she gets it from, but she is one tough cookie. So, here's to Brianna, becoming fully "Bionic" on May 20th, 2008. I LOVE YOU!
Wednesday, April 30, 2008
Post-Surgery - Day 1
So today was a pretty good day for Brianna. She was dying to go outside, but her pleading got her nowhere. I was able to take the bandages off. That was much easier than I thought it would be. Nothing was stuck to them, so they lifted right off. Her incision isn't too bad. Starts at the bottom of each ear, and goes up to the top of the ear, and then about 3" at a 45 degree angle toward the back of her head. Her hair is barely shaved at all. He probably shaved 3" of hair, no thicker than 1/2". So, once we wash her hair, I bet you won't even be able to tell.
Brianna didn't nap at all today. Every time she put her head down, she said that it hurt. I gave her the Tylenol with codeine. She went to sleep about 1/2 hour - 45 minutes later. She only slept for about 1 hour, and must have moved her head, because she woke up crying. I say, this has been harder than I thought it would be. She can't seem to get comfortable at all. She says that the back of her head is sore, and so is her neck, so that doesn't leave much room for comfort.
My daughter is amazing. With that sentence, I feel such amazement. I would be a whining wimp in her situation. She is just the strongest, bravest little girl ever. My daughter is amazing.
One thing I found interesting...She says that she can hear herself talk. She said that sometimes during the day she was able to hear the TV. I wonder if she is hearing it. That would just make this experience so extreme. I know the doctor said 70% chance she would retain some residual hearing, but already? Is this real? We will see. I will keep you all updated on her progress.
Activation day is set for May 20th. Just under 3 weeks!
Thank you all for your support. I hope to have a bit of time here soon to thank you all personally, but for now, GROUP HUG! And a great big thank you!
Michelle
Brianna didn't nap at all today. Every time she put her head down, she said that it hurt. I gave her the Tylenol with codeine. She went to sleep about 1/2 hour - 45 minutes later. She only slept for about 1 hour, and must have moved her head, because she woke up crying. I say, this has been harder than I thought it would be. She can't seem to get comfortable at all. She says that the back of her head is sore, and so is her neck, so that doesn't leave much room for comfort.
My daughter is amazing. With that sentence, I feel such amazement. I would be a whining wimp in her situation. She is just the strongest, bravest little girl ever. My daughter is amazing.
One thing I found interesting...She says that she can hear herself talk. She said that sometimes during the day she was able to hear the TV. I wonder if she is hearing it. That would just make this experience so extreme. I know the doctor said 70% chance she would retain some residual hearing, but already? Is this real? We will see. I will keep you all updated on her progress.
Activation day is set for May 20th. Just under 3 weeks!
Thank you all for your support. I hope to have a bit of time here soon to thank you all personally, but for now, GROUP HUG! And a great big thank you!
Michelle
Tuesday, April 29, 2008
Update on Surgery....She's home
Brianna did wonderful. I will keep this short and sweet because I am truly exhausted.
We got to the hospital at 6:00am. They took us immediately to the pre-op area. There we played cards for a while until they were ready for her. We met really quick with the surgeon, anesthesiologist , and the nurses. They let me know that a rep from Cochlear America was there, as well as the ENT surgical students that I gave authorization to view the surgery. They took her into the OR at 8:15. At 10:30 I got the first call, the doctor was working on the 1st side, and everything was going great. It will still be a few more hours. The nurse suggested we go eat. We took her advise and went in pairs (Wes and my parents were there with me). So after lunch and a trip to the gift shop, I returned to the waiting area. At 1:25, Dr Diaz-Ordaz came in, and said that they were finished, everything went perfectly, and they were able to get full insertion on both sides. YEAH! She is in recovery, and they will get us when she wakes up. 20 minutes later, she was asking for mommy. They had removed the IV before she woke up (and put it in after she was asleep), so she didn't even know she had one! She looked so tired. By 3pm, we were out the door. She had 1 dose of Tylenol because she was saying that the incision area hurt. We came home and she was hungry. So 1 pudding cup, Reese's peanut butter cup and a bowl of soup later...she was back to herself. She watched scooby doo with the captions on, and was just as happy and full of energy as ever.
She received 2 of the cutest little koala bears with cochlear implants! She is asleep with them now. The doctor said that she has about 70% chance of retaining her residual hearing, so in a few days we will know if she has any of that available. If she does, the surgeon said that she can resume wearing the hearing aid after 1 week.
These are some pictures from today, and I will update again soon! Thank you guys for your support. So far so good!
Monday, March 24, 2008
Brianna's History
At the end of her kindergarten year (2006), I received a note from the school nurse. Brianna had failed her standard hearing test at school, but not to worry she passed the re-test. I called the pediatrician and asked her what this could mean. She said that Brianna might have just had an off day, or it could be something more. Lets make an appointment with the audiologist.
Every summer Brianna and her sisters spend the summer with my parents in Georgia, so I made the appointment for August when they got back from vacation. We went into the appointment, not realizing what we were about to hear. Brianna has profound sensorineural hearing loss in her left ear, and mild loss in her right ear. What? Boy, did I go straight to denial and guilt. What did I do? How did this happen? How did I not know?
From there, we went to the ENT. She recommended a hearing aid for the right ear. She told me that there wasn't anything that could be done for the left ear, a hearing aid would not help. (I am still naive at this point, and very uninformed as well). So we went for a hearing aid evaluation. Welcome to I am a divorced mom, supporting my kids on my own with little to no help from my ex-husband. I work and carry the insurance, the insurance that would not pay for the hearing aid. So a bunch of phone calls, crying and groveling for help from different places, I raised $1200, the rest I saved up and we got her a hearing aid. Bright pink with a purple ear mold.
The hearing aid seemed to do wonders. She received it on October 18, 2006. Her FM system at school came in during the first part of 2007. From there, it seemed like this is something we could deal with. She was doing well in school, and she was meeting once a week with the hearing itinerant for the school district. She was getting regular (every 3 months) audiograms, and things were staying about the same.
Everything was going great until this past Christmas season. I noticed that Brianna would not respond to me unless I was looking at her, and she was looking at me. I made an appointment with her primary physician, the ENT and the audiologist. Her primary let me know that she appeared healthy, no ear infections, no apparent problems. The ENT suggested another hearing test, and a hearing aid test to make sure the device itself is working properly. This hearing test let us know that Brianna's hearing has not only gotten worse, but the right ear (what Brianna calls her "good" ear) was now showing a profound loss. The wonderful audiologist (Marie) suggested that we go to their other office in the city, and have Brianna tested by another audiologist. She also suggested that we meet with the CI person at this office.
Cochlear Implant? Why? What? When? And here we are. Now we are on the Cochlear Implant journey. We went in to the CI appointment on Feb 14th, Brianna was dressed up in her valentines day dress, black velvet top with a big poofy pink skirt. She did great, Michelle and Marie did the audiogram, then Michelle spoke with us about the CI. She felt that Brianna is a great candidate because of her loss at the current time, but also because she has been able to hear in the past. So we move forward. We met with the ENT/CI surgeon (Dr. Diaz-Ordaz) on March 3rd. He agrees, bilateral is the way to go. He was wonderful, he answered all my questions and Brianna's questions too. Her questions revolved around colors of the parts and how much hair he will shave. On March 5th, she had her CT Scan and MRI. On the 10th she had her meningitis vaccine, the 15th was her speech evaluation (she is within normal limits) and one more audiogram. On Tuesday, March 18th, 2008, I got the call. Her surgery will be April 29th, 2008.
So Brianna picked out her pink processors (she gets 2 for each side, so we are also getting a beige set). We are going with the Cochlear Americas Nucleus Freedom. In all honesty, the deciding factor on the brand was Michelle telling me that they have seen more failures with the Advanced Bionics, and the doctor confirming this. They both said that it was still a great company, blah blah blah. I don't want something that has a greater chance of failing in my daughter's head.
The decision to go bilateral was mine. I originally wanted to just to the left ear (the "bad" ear in Brianna's terms). What I figured was that if it did not work, no harm, since she wasn't hearing with that ear anyway. But then I did more research. Thank you Internet, Thank you! I read a few blogs, personal stories and research studies. What I found (in my opinion) was that it would be better to implant the ear with more recent hearing. The success rate would be greater, and rehabilitation would be less time. She would probably get more benefit from the right ear than the left, in a shorter amount of time. Then I was thinking, well, if this works, I don't want to put her through this all over again to do the other ear. Then I read about people with the bilateral implant, how impressed they were with the range of sound, and the quality. My decision was, I want the best for Brianna. She is so intelligent, so beautiful and so strong. I want her to have all the advantages that her sisters have. I don't want her to suffer because I did not make the decision to do all that I could for her. Bilateral will give her the most benefit, hopefully.
So this is the start of Brianna's journey. Thank you to Abbie for all the inspiration. I have read your blog a million times, and you are the strong and intelligent woman I want my Brianna to be like. Also thank you to Sam Spritzer. I have read your blog as well, and you have provided so much information. Brianna will have the same doctor you had, and even though I don't know you, just knowing you went through this same procedure with the same audiologist and surgeon, for some reason makes me feel less nervous. And all the rest of you who have made the decision and shared your experience with the world, Thank you! Without all the knowledge and opinions you have provided to me, I would still be researching, scared, and just left with a lot of unknowns and what ifs. I hope someday we can help someone with our experience.
Every summer Brianna and her sisters spend the summer with my parents in Georgia, so I made the appointment for August when they got back from vacation. We went into the appointment, not realizing what we were about to hear. Brianna has profound sensorineural hearing loss in her left ear, and mild loss in her right ear. What? Boy, did I go straight to denial and guilt. What did I do? How did this happen? How did I not know?
From there, we went to the ENT. She recommended a hearing aid for the right ear. She told me that there wasn't anything that could be done for the left ear, a hearing aid would not help. (I am still naive at this point, and very uninformed as well). So we went for a hearing aid evaluation. Welcome to I am a divorced mom, supporting my kids on my own with little to no help from my ex-husband. I work and carry the insurance, the insurance that would not pay for the hearing aid. So a bunch of phone calls, crying and groveling for help from different places, I raised $1200, the rest I saved up and we got her a hearing aid. Bright pink with a purple ear mold.
The hearing aid seemed to do wonders. She received it on October 18, 2006. Her FM system at school came in during the first part of 2007. From there, it seemed like this is something we could deal with. She was doing well in school, and she was meeting once a week with the hearing itinerant for the school district. She was getting regular (every 3 months) audiograms, and things were staying about the same.
Everything was going great until this past Christmas season. I noticed that Brianna would not respond to me unless I was looking at her, and she was looking at me. I made an appointment with her primary physician, the ENT and the audiologist. Her primary let me know that she appeared healthy, no ear infections, no apparent problems. The ENT suggested another hearing test, and a hearing aid test to make sure the device itself is working properly. This hearing test let us know that Brianna's hearing has not only gotten worse, but the right ear (what Brianna calls her "good" ear) was now showing a profound loss. The wonderful audiologist (Marie) suggested that we go to their other office in the city, and have Brianna tested by another audiologist. She also suggested that we meet with the CI person at this office.
Cochlear Implant? Why? What? When? And here we are. Now we are on the Cochlear Implant journey. We went in to the CI appointment on Feb 14th, Brianna was dressed up in her valentines day dress, black velvet top with a big poofy pink skirt. She did great, Michelle and Marie did the audiogram, then Michelle spoke with us about the CI. She felt that Brianna is a great candidate because of her loss at the current time, but also because she has been able to hear in the past. So we move forward. We met with the ENT/CI surgeon (Dr. Diaz-Ordaz) on March 3rd. He agrees, bilateral is the way to go. He was wonderful, he answered all my questions and Brianna's questions too. Her questions revolved around colors of the parts and how much hair he will shave. On March 5th, she had her CT Scan and MRI. On the 10th she had her meningitis vaccine, the 15th was her speech evaluation (she is within normal limits) and one more audiogram. On Tuesday, March 18th, 2008, I got the call. Her surgery will be April 29th, 2008.
So Brianna picked out her pink processors (she gets 2 for each side, so we are also getting a beige set). We are going with the Cochlear Americas Nucleus Freedom. In all honesty, the deciding factor on the brand was Michelle telling me that they have seen more failures with the Advanced Bionics, and the doctor confirming this. They both said that it was still a great company, blah blah blah. I don't want something that has a greater chance of failing in my daughter's head.
The decision to go bilateral was mine. I originally wanted to just to the left ear (the "bad" ear in Brianna's terms). What I figured was that if it did not work, no harm, since she wasn't hearing with that ear anyway. But then I did more research. Thank you Internet, Thank you! I read a few blogs, personal stories and research studies. What I found (in my opinion) was that it would be better to implant the ear with more recent hearing. The success rate would be greater, and rehabilitation would be less time. She would probably get more benefit from the right ear than the left, in a shorter amount of time. Then I was thinking, well, if this works, I don't want to put her through this all over again to do the other ear. Then I read about people with the bilateral implant, how impressed they were with the range of sound, and the quality. My decision was, I want the best for Brianna. She is so intelligent, so beautiful and so strong. I want her to have all the advantages that her sisters have. I don't want her to suffer because I did not make the decision to do all that I could for her. Bilateral will give her the most benefit, hopefully.
So this is the start of Brianna's journey. Thank you to Abbie for all the inspiration. I have read your blog a million times, and you are the strong and intelligent woman I want my Brianna to be like. Also thank you to Sam Spritzer. I have read your blog as well, and you have provided so much information. Brianna will have the same doctor you had, and even though I don't know you, just knowing you went through this same procedure with the same audiologist and surgeon, for some reason makes me feel less nervous. And all the rest of you who have made the decision and shared your experience with the world, Thank you! Without all the knowledge and opinions you have provided to me, I would still be researching, scared, and just left with a lot of unknowns and what ifs. I hope someday we can help someone with our experience.
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