Monday, November 17, 2008

5 months and so much has changed

Here we are, thinking about Christmas and the holidays that are coming up. Last year, Brianna's hearing was almost non-existent. Most of my holiday shopping was done for her by first asking myself if the toy I was looking at would make her feel uncomfortable. Did it make a sound? If so, was sound a major part of the toy? She wanted so desperately a keyboard and a Barbie cash register. The keyboard was obviously electronic and mainly sound oriented. She wanted it so desperately, she wrote a letter to Santa asking for only that, promising that she would be good next year and that she had always wanted one. So, of course she got it. She plays on that keyboard all the time. From the moment that she got it. She couldn't hear the sounds, but she would play songs and sing along to the music as best she knew how. Then there was the Barbie cash register. That had sounds, but there was a lot more to it than just the sound. Well, the main reason for me bringing all this up is that she comes running out of her bedroom yesterday, just overjoyed that I had put batteries in the cash register (I had not, they were the batteries that it came with). I asked her to show me. Well the register "dings" and talks and makes other noises. She hasn't played with it in a while, so I don't know how long ago she may have heard these things. But 5 months after activation we are still having those amazing "I hear it!" moments. This year, I don't have to worry about the toy having sound or not. She can hear almost everything. Go figure, this year it is all about Bratz dolls, which don't make noise. I love seeing how much she has changed, in a completely good way. She has come out of her shell so much. I absolutely cherish every moment. This is going to be a wonderful holiday for my family.
I hope you all will have an equally wonderful one. I hope that the joy I get everyday from my family will continue forever. I love the laughter that I hear, the little secrets that I am told (my son likes to "give" me secrets, such as "Mommy I want to give you a secret." He leans in to my ear. And in a regular voice, "I love Dora the Explorer." How cute, huh?)

Enjoy your Thanksgiving, and for those of you braving Black Friday, good luck!

Sunday, October 26, 2008

Call Me Crazy...

Ok, so this may just be me being me, a little bit crazy. I just want to help and make the world a better place. I am trying to use my new found freedom to figure out where I fit in this place. And one thing that I have always wanted to do is find out a way to help my community.
Some background...about 3 years ago, we found out that Brianna was hearing impared. We found that one ear was completely deaf, and the other was in need of a hearing aid. I also found out that my insurance company doesn't provide assistance for that hearing aid. I had to come up with $2,000 just for her one hearing aid. I am a divorced mom of 4, who was not receiving much help from dad, I worked full time, but making next to nothing after paying for daycare and medical insurance through work. I was shocked at this price. There were no government programs to help me. I made too much for Brianna to go on Medicaid, and too little for me to be able to afford this right away. And right away is what Brianna needed. So I reached out to the community. I received help from the Lions Club and Brianna's Elementary school. I borrowed what was left, and we got her the hearing aid within about 1 month.
One thing during this whole process that just upset me more and more was that there wasn't help for Brianna. There wasn't someone I could turn to and say, hey, this is a child. She NEEDS this, and I don't have the means to help her. The Lions club did help, I don't want to discount that at all, but it took a lot. They criticized me because I had a newer car, I didn't own it, but I had a loan out for it, they made off the wall suggestions like asking her father for the money (her father withdrew himself from her life years ago, after our divorce). After a lot of crying, pursuading and heartache, they did come through for us. But what about that mom or dad or family out there that just can't find where to turn? What about those people that take the first "NO" they hear and give in to the helplessness? What about those children who have to wait months or years for their family to save the money to get them the hearing aid that they deserve and need?
So, this is where I want to come in. I want to do something. I want to be able to help people. I want to be able to at least take one huge burdeon off the shoulders of that parent who just found out that their precious, perfect and beautiful child needs help. All of you who have gone through this stage, the finding out there is a hearing loss, you get angry, you deny, you get another opinion, you get said and they you accept and grow. I want to do something that makes the financial part a little easier to cope with. That way they can put their emotions into their child and getting the child and their family through this step.
So I am thinking about this a lot more lately. This is so close to my heart. What can I do? I want to start a charity or a non-profit. This is a very rough idea right now. I have all the good intentions and heart felt desire to do this. What do you think? Does anyone have experience or input that you would like to share with me? I know that I am thinking all heart right now, and very little planning it out and what it would cost to start. I haven't gotten that far yet. But the way I figure it, who will give me their opinion better than people that may have been there themselves. People that may have felt the way I do, or people that may have been able to do something to help already. You!
So, let me know if you have anything to say about this. Opinions, suggestions, or flat out tell me I am crazy!

Saturday, October 25, 2008


So here are a few updates on our lives...
On Monday I was laid off from my job. No big supprise there, they had me training someone else that I work with for the last month, just didn't tell me that I was training him to actually DO my job. So the job hunt begins...

Thursday I had Brianna's IEP meeting. I had to do a phone conference because since I am not working, I had to pull my kids out of daycare, and had no one to take my son for me. Anyway, it went OK I guess. I haven't gotten any paperwork yet to sign, but once I do, I will go over it all. One thing I asked for was to have an FM system included in the IEP, but they refused to. They said that they would need a "detailed" letter from her audiologist explaining why that would help her. It has to be on official letterhead. I guess I don't know what else she would write a letter on, but I am going to call her Monday and ask her to write one. The only other part that bothered me during the meeting is that the Psycologist wanted her Classified as Hearing Impared not Deaf. He read me the definition of Deaf, which roughly explained that the person does not receive benefit from amplification. He took that to mean her CI. I stated my case, that a CI does not amplify, it processes. It is a bionic device, not a hearing aid (which as we all know amplifies). I explained to him that if they classify her as hearing impared, that would imply that without the CI, she has some hearing. She does not. She is bilatterally implanted, and her residual hearing is non-existent. The rest of the board agreed with me, so she was classified as Deaf. Not that it is a big deal, but it may come up in the future. She will receive preferential seating for class, activities and testing. She will be given directions as many times as she needs them, and all oral exams will be repeated twice. She is not getting any extra time to complete a timed test, but I didn't feel she needed it. She will also be given flexible testing locations, this way if it is too noisy in the area where the test is given, she can be relocated to an area that suits her needs better. I don't think that they will have to change anything for her. She has goals, 6 of them. 4 are acidemic, 1 is to learn sing language and the last is to learn basic troubleshooting of her implant. That is mine to teach. She already knows a great deal about her implant, but until this point I have taught her teachers and the school nurse the troubleshooting (changing batteries, reading the error codes). But we will do that one just fine. So once I get the letter from the audiologist, we will have to have another meeting and put the FM system in there. I think it is silly that they need a detailed letter, they use an FM system with the other CI child in the district, and for all the HA children. But I will follow their protocol. Who knows, maybe they all had to get the letter as well. The board was quite a bit bigger than I was told. There were 8 including myself. It was great to hear all those people concerned about and caring for my Brianna. She is loved.
So for now, I am loving being home with the kids. Actually being involved in their daily lives. We used to leave at 7am and not get home until 6:30pm, so it was hard to show them lots of attention and get homework done, and dinner and cleanup. Who knows, maybe I will find a stay at home job. Do those even really exist? Ha. Well, I hope you are all doing well. I will hopefully have a bit more time to update and read all your updates. I have been lacking on my blogging for quite some time now. Enjoy your weekend!

Thursday, October 16, 2008

IEP Meeting

So Brianna's first IEP meeting is next Thursday. I hopefully can attend. It's during the day, So hopefully I can get off of work. I called Brianna's doctors and asked them to write letters for me to bring. Does anyone have any other suggestions for me? I have been reading the laws, and how to prepare, but it is all so confusing. I don't really know what I should be asking for. I guess I am a bit overwhelmed.

Ok, so the letter came yesterday, the meeting is in a week, during my normal work day, I have 1 day of vacation that I can still use for the rest of the year (I wanted to save it for the day after Christmas, but oh well). Does anyone know how long these meetings are? And most importantly, what should I expect? I mean, will this be the only meeting, or will it drag out through meeting after meeting? What do they mean by saying in the letter that it is a "mutually agreeable time"? I didn't agree to the time, wasn't even given options except to not come, do a teleconference, or postpone it.

I am really confused about what I am supposed to ask for. I mean, Brianna gets all the help that she needs (in my opinion). She sees the Hearing Itinerant every day, she has preferential seating and a very patient and caring teacher. What more could we ask for, right? Well one thing is an FM system. They gave me a hard time on that one already this year. Can I ask for that to be added to the IEP? Does it get that specific? All you moms and dads out there, all you experts...can you provide me with information I can understand? I read the laws, the meanings of the different terms that the laws use, but I am still pretty clueless as to what my role really is. There won't be any medical personnel there, so hopefully the letter from the Audi will be a good thing to bring.

Other than that, things are great. Brianna is doing so well. She is getting great grades on her spelling tests! As you can imagine, spelling tests and other oral tests were the hardest for Brianna before the implants. But now, she brings home more 90-100% tests than I could have ever hoped for. She is so much more at ease with school. She is making friends and just sociable now! What a change this year has been!

Thank you all for reading this, and please let me know if you have any suggestions for me! Enjoy your Friday!

Tuesday, September 30, 2008

IEP problems

So, it was probably my fault for not pushing sooner, but here's what is going on....

Brianna never had an IEP. The school convinced me that they were doing everything necessary for Brianna (and they were), so she didn't need one at that time. Last year, knowing that state testing would start this school year, we started the IEP process. I had to fill out all these forms giving my permission for her to be evaluated by a bunch of people. Social workers, psychologists, hearing specialists, speech therapists. This was all done before the end of school last year.
So this year, right at the beginning of the year, I asked about the progress. We still had not had a meeting scheduled. I was told that the paperwork was sent to the special ed dept, and I would have to call them. I did. 4 phone calls later, I was finally called back. They said that they had no record at all of Brianna being special needs. OK, so I called the school. Left a message and then the Special Ed dept. called me back again stating that the paperwork was still being completed. It had been at least 3 months! So I called the social worker at school. He let me know that he sent the paperwork to the Special Ed dept, and that I would have information sent to me within 2 days. That was last Monday! So by time Friday rolled around, I started calling again. I read that you are supposed to have the IEP meeting within 30 days of the testing. We are well over that time frame. So, since I didn't get the paperwork I called again on Friday. Today I get a voicemail from the Special Ed dept letting me know that by Friday I should have some paperwork to fill out and send back again.
I am getting very frustrated. I don't know what paperwork I still need to fill out, but darn, can't we get this moving? You would think, hey here's a little girl that needs our help, lets help her. I will keep you all updated, but I really just needed to vent. I love her school system, and she isn't being denied anything that she needs, but she needs the IEP in place before the testing this spring. Part of the testing is a verbal listening portion, and I want her to be able to either read that section or have someone sit there and read it to her, face-to-face. Hopefully this will be possible.
Other than that, things are going OK. Brianna is doing well in school this year. Her teacher is great. She spent some time this summer learning about cochlear implants, and was very knowledgeable when I first spoke with her in August. I couldn't ask for better teachers!

Wednesday, September 3, 2008

1st Day of School

So today was Brianna's first day of school. I have been talking & emailing her teacher for a few days, and I think she was pretty prepared. Brianna was so excited this morning to get back to school. She really loves school. I hope she stays like that forever!
Anyway, she said that everything went fine today. No problems. She didn't have any issues with hearing the teacher or other students. I am so glad. She is so strong. I can't imagine myself in her shoes. I would never have been able to do all that she has done!
I hope everyone else is enjoying this time of year. Hopefully the snow will hold off for a while. I am just not quite ready for that yet!

Sunday, August 31, 2008

My other kids Audiograms

I had Brianna's sisters and brother's hearing tested this past week. They all tested within normal limits. Whoo, what a relief. Don't get me wrong, I think a 2nd time around might be a bit easier, but not having to do it at all is even easier! So, that's my good news for today.

Brianna's birthday is tomorrow. We got her an iPod. Just a small purple one, I think it's called a Nano. Anyway, I put a couple Disney Cd's on it, and she will give it a whirl tomorrow. I really hope everything works well for her. We have an audio cable that came with her processors, and we will get to test that out! Has anyone with implants had luck with an iPod? What about bi-laterally? Is there a way to get the signal to both processors? Maybe an adaptor or something? Well, if you have ideas, throw them my way! Thanks!

Hope this finds you all well!

Thursday, August 28, 2008

Elle's Ears = Happy Tear-fest!

First and foremost, thank you Elizabeth and Rachel. Thank you does not even cover it. I received my Elle's Ears book today. We ordered it hoping that Brianna could share it with her new classmates next week when school starts.
I opened it right up and Brianna sat on my lap. She read the first few pages out loud to me, then I took over. I did fine up until the activation page. I rush of tears came over me. I have never cried so hard reading a children's book. "Where the Red Fern Grows" did not have this much of an emotional impact on me! Brianna looked up at me when she heard my voice crack and let me know that Elle's mommy and daddy cried, but I don't have to! How sweet is that. So, I took that moment to calm down and we finished the book. She took it into her room and read it a few times. After she went to bed, I read it again. Flood gates open! I called Brianna's dad (he is out of town on business again) and read it to him. He cried. He made me stop reading after the activation part so that he could compose himself to hear the rest. We both cried through the end. I am so thankful that you both cared so much to write this book and make it available to us. It was really just perfect. If anyone has the opportunity to purchase it, I would recommend it. It is the first children's CI book that I have read, and it was perfect.
Brianna is going to make a collage of pictures to show the class, and her teacher will read the book to her class. I really think that Elle's Ears will show the class that Brianna is special, but also that she is just like them, just with a cool set of pink "ears"! I just had to express my gratitude for this book, and for all of you sharing your experiences with us. It is so great to feel like we are not alone. There are a lot of people going through what we are going through, and sometimes it is just what you need to hear. You are not alone, and you made the right choice.

Thank you!

Saturday, August 16, 2008

Brianna through and through!

This is a picture of Brianna a few weeks ago. What a fireball!
This is her daily look. She is so stubborn, so opinionated, and so Brianna! I absolutely love this picture. I love taking pictures of the kids, and each one shows a little bit of their personalities. But this picture takes the cake. It is my favorite picture. Some people would look at this and say "What a brat." I look at this, and realize that Brianna has gone through so much this year. She has given everything 100% and she still remains the same as she has always been. She is such a loving child. And, when she doesn't want her picture taken, boy can she express that in her face! I hope you all enjoy a little smile when you see this!
An update from Brianna's mapping this past week. Her audiogram shows 25-30dB almost straight across. She still has a little dip around 3000-6000Hz. She is understanding words so well. I can talk to her in another room, and she can respond appropriately. Now comes the task of weaning her off of lip reading. Since Brianna taught herself to lip read at a very young age (we didn't learn that she was probably born with a hearing loss until 2 years ago), it's a habit that we have to try and break. We really want her to rely on the CI for communication, and at least get her to a comfortable state of lip reading and hearing with the CI. She also had a speech evaluation. She has normal speech for her age. Everything was age appropriate, and she has even begun to correct her "r" sound! They said that she is doing well on her own, and have no special speech therapy recommendation for this coming school year. That is great to hear! She never had much of a speech problem, and in my eyes, the less time she spends out of the classroom, the better. She is in a mainstream school, and I want her to continue that way. I have always been worried about her missing class to go to "special services". In previous years, they have always been able to take her out during free time, or specials (art, gym or music). But I want her to experience everything, hopefully this will be the year for that.
Hope everyone is well!

Thursday, August 7, 2008

Brianna is back!

Brianna and her siblings have been on a little vacation with their grandparents. Just a little time to rest and relax this summer (for me too!) But they are all back now safe and sound. Brianna has another mapping session on Wed (8/13/08) followed by another speech evaluation. Maybe I am too naive, optimistic or just unobservant, but I don't think there's anything wrong with her speech. Since the activation in May, we have worked on the only problem that the speech therapist noticed last time; "r"'s. She used to say "oyange" not orange, "dwesser" not dresser and so on. Now she is speaking beautifully. So I don't really foresee any problems there. However the upcoming audiogram is where I am concerned. Being the nature of summer, it has rained a lot, and when it's not raining, Brianna and her siblings always find something else to do with water. So she hasn't been wearing the CI processor as much as before summer hit. She wears them in the morning and evening, but during the day, she takes them right off. I have thought about having daycare make her keep them on, but I don't want her to feel like she is being punished. Brianna absolutely refuses to wear her processors when they may get wet. She is so protective of them. I am sure that's normal. So, she would have to make the choice to either wear them in the rain, or under the sprinkler or else she would have to sit out. I guess I took the easy way out and just let her take them off. So, I am curious to see what the audiogram will show. Has she lost something in not wearing them from the moment she awakens to the moment she says goodnight? We will soon find out. I guess if she has, we will definitely see how "water resistant" these processors are!
Later this month, I am taking my 3 other children in for audiograms and hearing evaluations. Since they were never able to tell me what caused Brianna's loss, or when it really started, I don't know if the other kids have it as well. They all have hearing tests done at school. There has been no cause for concern. But now that things are finally on an upswing with Brianna, I feel like I can tackle other problems right now. So without postponing it any longer, all the other kids will have the tests done. I guess I am pretty confident with my older 2 girls that they do not have any hearing issues, but my son is another story. He's 3, and I don't care what anyone says, 3 is worse than 2. He recently has started ignoring me. He will look at me, and I know he knows that I am saying something, but he doesn't respond at all. He gets that from me, I am stubborn and I have a tendency to ignore people when I just don't want to hear what they have to say! I know, bad Michelle. But this isn't about my personality problems! Anyway, I am hoping that he is really just standing his ground and purposely ignoring me, and not losing his hearing as Brianna did. But this too will be known soon.
Other than all that, the summer is going well. We are just enjoying the heat for a little while and all that summer has to offer. We are going to the county fair next weekend. My brother is getting married this weekend, and we are going to see the Buffalo Bison's (baseball) in two weeks. I love summer, so relaxingly-busy! I hope everyone out there in blog-land is doing well and enjoying the summer!

Sunday, July 13, 2008

Thank you for all your answers...

Thank you to everyone for your tips and ideas. Brianna called me tonight and let me know that all is back to normal. She put her processors in the dryer kit twice, and that seemed to work. Thank you all again. Crisis averted!

Friday, July 11, 2008

A Question for those that have been there, done that

Brianna is down in Ga visiting me parents, and she let me know last night that she hears "raindrops" in her right ear. The left side isn't doing this. She can still hear, but has the raindrops as well. Any ideas on what this is and how to fix it? I suggested that she charge up her battery, and we switched to her 2nd program (she has 3 programs that are the same). Could this be tinnitus? Anyone have an idea? Thank you!

Tuesday, July 1, 2008

4th Mapping Session

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. :)

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!

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!

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!

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.

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!

Tuesday, May 13, 2008

Activation in 1 week! Whoo Hoo!

Brianna's activation is in one week! She is just doing great. For mother's day she made me the cutest hotpad. She is such a cute little girl. We were outside playing in the backyard, and she put on a "play" for me. It consisted of her singing (in her beautiful, off-key, out of rhythm voice!) "You are my sunshine". She had hand movements and everything worked out to go along with it. When she finished, she did a cartwheel. I almost lost it. My heart jumped, and I thought, "NO! You will damage the implant!!!" Of course she didn't. I guess those little moments where I overreact and my heart jumps, will be something I have to get used to. She is such a daredevil. Man am I in trouble!
So, one week away. I think we are ready. She is ready. She has been adjusting really well. Her hearing is back to where it was before the surgery, it's not much, but she can hear me if I yell for her. She can't wear the hearing aid, even though the doctor says it is fine. When we put it in her ear, it won't stop squealing. The audi said that this is probably due to swelling that hasn't gone down yet, so the ear mold isn't fitting well. But gosh darn it, my daughter can hear me yell! It's probably not the greatest for her, since all she hears is me yelling (If I need to get her attention or honestly just to test her to see if she can hear). But I am so happy about this.
I know why this makes me feel better... and in hopes that this will help someone in the future...I will share. I was scared that I was doing something to her to ruin her life. I really thought that even though her hearing was bad, and not going to get better, if she had it, all is not lost if the implants do not work. I don't really know how to put my feelings on this into words. I was just plain afraid of making the wrong choice, so I figured if her hearing stays the same, and she has the implants, the worst that will happen is she will be where she was before the surgery. Now knowing that she can hear as she did before, my gosh I am breathing easier. I know it was the right choice, whether her residual hearing was retained or not, but I just wanted some sort of "insurance"! So there's my deep, dark, inner secret!
On another note, thank you to all who have commented to me. Your thoughts, tips and information are so appreciated! I finally have the feeling like I am not alone in this. Even though none of you are here with me in person, you are here with me in thought. And that means so much to me! Now, for another favor from you guys...I want to record her activation (and post it if I can figure that out). I have a camcorder that records on mini-dvds. Anyone have any suggestion on how many disks I should get? I think I can record on SD Card as well. What do you guys suggest? How long is the activation? I have seen a bunch of videos, some with multiple parts, some only 5 minutes long. So, info on this would really help! Thank you in advance!


Tuesday, May 6, 2008


Abbie, you are an amazing blogger! The detail of your posts. How can you remember all that you do? Gosh I am getting old, I can barely remember my name! And thank you for keeping up on Brianna's progress. And thank you to everyone for your support!

We are 2 weeks away from activation. And boy do I have a ton of questions. Should I list them? I don't want to seem to demanding, but advise is openly welcome...

1. Is there anything I can do to prepare Brianna for what she is about to experience? I have noticed that she wants desperately to please me. So she tries to have the reaction that she thinks I want her to have. I am afraid that she may say that she is hearing something different than she is hearing just because she thinks that is what I want to hear. She is such a sensitive and caring child. Just a blessing!

2. What will she hear. I read that voices will not sound like voices. Ducks, Mickey Mouse, gibberish. Does anyone have any description of what it sounded like to them or their child?

3. How overwhelming will this be for her and her brain? I hear that you get really tired after activation from all that your brain is learning. Should I plan on keeping her home from school? Or do you experienced CI-ers think she is fine going to school the days following initial activation?

4. What comes in the kit? Call me a kid in a candy store, but I love reading manuals and playing with cables (I am in Information Technology and just such a dork). But I am dying to know what neat things she will get in the kit. She has Nucleus Freedom implants. Will she get cool stuff? Cases and whatnot?

5. Is there anything that I can do at home to help her with learning to use the implant once activated? This hasn't been discussed with me, and I am sure it will. But a little head start doesn't hurt, right? I read that books on tape are good. What about cartoons with captioning? Any other fun things that you all can think of?

6. I don't know if it will be a problem or not, but I have read that sometimes the implants can be overwhelming at first. Is there any tips from you parents out there to help Brianna want to wear them? Just in case she says she doesn't want to. I don't want to force her (I will if it comes to that), I just want them to be fun, and interesting and helpful to her. So that she wants to wear them. Did anyone go through their child not wanting to wear them in the first few days? Or did you yourself not want to wear them? Why? What got you through it?

7. What can I realistically expect? Deep down, suppressed in my innermost thoughts, I hope that Brianna will be activated, and she will understand me, and hear the world. But realistically I know that is not how it will go down. I don't want to go in there hoping for magic and get disappointed. I have read so many activations, and watched the videos. It is so hard to tell if the expressions are good, amazing and wonderful, or if they are disappointment, regret and sorrow. Please fill me in if you have any advise.

I feel like a needy worry wart! To tell you the truth, I am so excited! I can't wait for the "what is that sound?" and the "THAT is what a bird sounds like?!" moments. It will be like having a newborn. All those firsts, just different firsts. You all know I am sure. I am just counting the days, hours and minutes!! (that's 13 days, 14 hours and 5 minutes for all those counting along with me!!!)

A little note on the happenings of this week. Brianna went back to school yesterday. Her class brought in money to send her a bouquet of flowers and a cookie expressions bouquet. And they each made a personal get well card for her. It was the sweetest thing. Reading those cards made my heart melt. Who knew so many 7 year olds were so unselfishly thoughtful? So this past weekend, Brianna and I made "Cochlear Implant Bracelets" for each of her classmates, and her teachers. They consisted of a silver spiral in the middle and colored beads on each side. Really cute. I will put a picture up. Anyway, she and I made them, and I wrote up a little something for her to read to explain their meaning to her class. Apparently they were a hit (who doesn't like a cute bracelet?).

She is doing well with going back to school. She bumped her head on the bus this morning and the school nurse called me after she calmed down to let me know that everything looks fine, she just was a bit shaken from the experience. When I asked her about it at home all I got was "The bus stopped and I hit my head. It's fine now." So I guess it was really ok! She is such a tough cookie, but worry wart mom called the doctor anyway. He of course said that since there was no bleeding or sign of trauma, she is fine until she goes in for her follow up on Thursday. You can never be too worrisome when it comes to your child, right? Anyway, she is doing great. Even with having no hearing, she got a 90% on her test yesterday. It was a practice state test. She takes them a few times a month to practice for the real one next year. Her grade before we got the student teacher for Brianna was a 68%. Big improvement. Thank goodness she really does go to a school that it more concerned with her academic success than anything else. I love this school district. Next Thursday Brianna has a field trip to go see a play. I asked that they try and seat her as close to the stage as possible, since she won't be hearing anything. I hope they do that for her. Then on June 5th, she is off to the zoo with the other children with hearing impairments. I hope that by then, the implants are really starting to work for her. How amazing it will be!

Ok, I am exhausted. Good night to you all, and thank you (in advance) for your input to my many questions!

Saturday, May 3, 2008

Counting down to activation!

So we are counting down. 17 days to go. Brianna is doing great. She is not taking anything for the pain anymore. Actually, she hasn't had Tylenol in 2 days. She isn't hearing anything, so looks like she fell into the 30% chance of no residual hearing. That's ok, she is doing fine. She isn't traumatized from not hearing at all. She understands more than I thought she would. She knows that the best is yet to come, and she is excited. I am keeping this short and sweet tonight, I am tired!
Thank you for all the prayers and well wishes. You are all wonderful!

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!


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, April 28, 2008

Tomorrow is the Surgery Day

So Brianna is fast asleep. She will be getting up so early in the morning. We have to be to the hospital by 6am. I received the call today confirming the 8am surgery time. She is so amazing. She is excited, and not the least bit scared. I sat her down and explained that the needle for the IV is only going to help, and that it will be done and over really quick. She seems ok with it now. We will see about tomorrow. I will update when I can after the surgery.

A note to all you wonderful people who left me support, advise and understanding, I really appreciate it. I am so greatful to you Abbie for getting everyone together when I really needed people there with me. The support was amazing. I feel so much better about this, I have had my ups and downs, and man, you guys all gave me a great "up"! I really appreciate it, I can't express how greatful I am that when I was down and really just needing someone to be there to pick me up, you all came through.

It has been one heck of a ride so far... and the exciting part is yet to come. Wish us luck tomorrow and I will report back with Brianna's amazing bravery and strength asap!

Wednesday, April 23, 2008

Down to 6 days...

So, we are down to 6 days. Brianna is starting to get worried about the surgery. She is mainly concerned with the IV. She doesn't like needles. She keeps asking me what she will hear afterwards. I tell her that she won't hear anything anymore, but she still asks. I wonder if she really understands that. She asks if she will hear herself talking. She wants to know if she will hear me, or her teacher. I just don't know how else to explain it to her.
Now that we are almost there, I am scared. I don't know if I should admit that or not, I don't want to upset anyone else. All the "what-ifs" are going through my mind. And of course they aren't the good what-ifs. Will this work? Will she even wake up? Will her face be paralyzed? What am I doing to her? Will she be disfigured? Will she resent me for this decision? I can barely talk about the surgery without thinking about these things. I don't really know why I am feeling these things now. I have been so excited for Brianna. Now, the excitement is gone, and it's just fear for her. I just don't know what to do with all these emotions right now.
On another note, Brianna's school called today. I guess some of the staff there wanted to do something for her and our family. So they are holding a dress down day in honor of Brianna. All the money they will raise for it will buy a grocery store gift card. That will be a huge help. It's amazing how much all this is costing us. I am so grateful for their caring and generosity. It's just amazing that people that you don't even know, can care about what you are going through.
I guess it's times like these when you really see that people care. Even strangers. I wonder if Brianna knows how much people love her and care about her. I can't wait to tell her how much I love her and have her really hear me. It's been so long since she has really heard anything. I really hope that day comes for her. (And for me). What I wouldn't give to just let her hear. I would give anything of myself to make her able to hear again.

Thursday, April 17, 2008

12 days and counting down!

So we are 12 days out. Brianna had her pre-surgical evaluation on Tuesday. Everything went fine. I am glad about that. They let us know what will happen that day. I was the only one paying any attention though. Brianna was sitting on my lap sleeping! I guess having the week off of school to do nothing but play and run around has just worn her out.
So, the day before surgery, they will call us with the surgery time. She is "tentatively" scheduled for 8am. We have to be there by 6am. They will take her into a room, which is no more than a bed with a curtain around it. She will get her last check up and then off to pre-op. The nurse said that I might not be able to go back there with her. We will see. I hope that I can stay with her for as long as possible. I don't want her to get scared and not have anyone to turn to except strangers. Then she will be off to surgery. Then recovery and home! All in 1 day. She won't stay overnight unless they think that she needs to.
Brianna is very excited. She talks about her surgery daily. I can't imagine where she gets the braveness and strength that she has. I am sure it's not me, I am petrified. I am more than petrified, is there a word for that? Well if there is, multiply that by 100 and that's me. I just want the day to come and go with no problems. Then I can worry about the next step.
So, 12 more days to go...

Wednesday, April 9, 2008

20 Days

It is amazing to me how calm Brianna is right now. She knows there's 20 days left until surgery, and yet every day is just another day to her. I can't imagine the world that she lives in every day right now.
I spent most of my lunch hour today watching CI activation videos on You Tube. Gosh they are so emotional. Each time I watch them, I end up crying. The one that I watched today was a woman who was activated, and she couldn't hear words, but she could hear the syllables. She was visibly moved with the experience. When her CI was first turned on, she jumped and started to cry. I can't imagine how overwhelming it is. Going from nothing to these foreign sounds, noise even.
I hope that Brianna has this amazing experience, and she starts to understand what she hears quickly. I know that it will take time, and I try to keep in the back of my mind that there is a chance for them to fail. I just want her to be the exception. I want so much for her. The few weeks of waiting for activation will drag along I am sure. I just hope that she doesn't get frustrated along the way. She's one tough cookie. I know she will take this just like she does everything else and she will be fine. I just hope it is better than fine. Better than normal. Better than what she has now.

Monday, April 7, 2008

22 days and counting!

So the surgery is 22 days away. Brianna asked me today about how long she will be out of school. I let her know that we are planning on her being out for 1 week. Hopefully she will feel all better by then. She will miss gym again for a few months. She broke her arm last summer and was out of gym classes until December 2007. Now she will be out of gym again. She definately does not like being taken out of class. But maybe that will give her a bit more time to learn some signs with Mrs. Sara. We will see how everything plays out.
I have to keep explaining to people that this is not an "instant fix". For some reason, people seem to think that she is going to go in for her surgery and come out hearing everything clear as day. I don't know, maybe it is just because I have done all my research, and I know what is going to happen. But I just think "duh". Why would people NOT do this surgery if it was that simple. Oh today I am going to go in for a bit of surgery and come out with no hearing loss at all. I am happy that people are concerned, or at least remember that we are going to be going through this, but geeze, it makes me feel like I am getting some second rate surgery for Brianna. Oh we can't afford the miracle insta-fix operation. So she gets the CI surgery.
Ok, enough frustrated whining! Brianna seems so excited. She talks about it every day. I really hope that I have done a good job explaining the process to her. She seems to really understand that she will be completely deaf for 4 weeks, and then once activated, she may or may not hear sounds again. I have tried to tell her that she will have to learn to hear all over again. I can't really give her too much more than that because I haven't experienced it. I guess we will just have to go through all this together. Good with good and bad with bad.
The most important thing to me is that Brianna is happy with the decision that I have made once she is older. Obviously at 7 she can't make the decision for herself. I just hope that I have made the decision that she would have made for herself. Time will tell. She is a strong, strong girl. She will be fine. Right?
A note on me right now. I am in a good place today. I seem to be on this emotional roller coaster. Some days (like today) I feel completely at ease with this decision. I have a feeling that it will work out for Brianna, and I am almost excited. Then I have days where I am scared to death, unsure and nervous. The other day I actually thought that maybe I ordered the wrong implant. For some reason they all blurred together, and I was just distraut over the functions and differences in them. I called the ENT and confirmed that I did infact give her the correct order. Whew. My mind was playing tricks on me. Stress maybe? I really need this to work out for Brianna. I go through the day, almost every day wondering if the other kids at school pick on her, or don't want to be friends with her because of her hearing loss. She hasn't been invited to a single birthday party, and I wonder why? If I really think about it, she is only in 2nd grade, and she has plenty of time for parties and friends. I spoke with Brianna's teacher about this very thing. She said that the class as a whole is completely understanding of Brianna's situation, and they are wonderful with helping her if she did not hear an instruction. On that point, I felt better. So here's to a good day. We will see what tomorrow brings. I really can't wait until my parents come up here to help out. The family support will be great. I won't lie, this year has been the hardest year for me, emotionally anyway. I can't wait to have them here to just be here. There's definately a difference between talking to family on the phone, and having them here in person. (We live in NY, my parents live in GA).
That's enough for tonight. We will see how it goes....

Monday, March 31, 2008

Time goes so slow when you are waiting

We are waiting for Brianna's surgery date to come. There isn't a day that goes by that Brianna doesn't want to talk about the surgery. She is so excited. One thing that is really bothering her is that she won't be able to hear anything afterwards. I don't think she really understands this part of the process. She asks me daily how she will do in school, and if someone will walk her places that she needs to go. She has Mrs. Sarah with her daily to help her through it all at school. Let me tell you, just having someone there for Brianna has made such a difference. She comes home from school less tired that she used to. She has so many more stories and bits of knowledge to share with me every day. Mrs. Sarah is a teacher that is studying to be a teacher for the deaf. She is working side by side with Brianna now. When Brianna has questions or trouble, she is able to ask right away, and get the answers. Brianna's 2nd grade teacher is wonderful, but I can't imagine how hard it is to run a classroom of 7 year olds, and on top of that, 1 who is almost deaf. She really is amazing.
Back to the topic. Brianna's favorite question to ask me is if she will get a big bed to sleep in. I let her know that she will be in a hospital bed for the day, but she will be so sleepy that she won't care much if it is big or small! She is so optimistic about this whole thing. She is just amazing. I am not to the point yet where I am scared out of my mind. I will get there I am sure. The other day I really just broke down. Questions were going through my mind. Is this the right decision? What if I do this, and it doesn't work? Will I be ruining her life forever? What if she resents the decision that I made for her? What if, what if, what if...
I got over that in about a day. I realize that without the surgery, Brianna will be deaf. It will be a matter of months, not years. She knows a little bit of sign language, but not enough to get by with it. Not to mention none of my family knows it, or her daycare, or really anyone that is involved with her. We could all learn it, but there is so much out there that she can't experience without sound. This past fall, I enrolled Brianna in a hip hop dance class. I wanted her to experience music and dancing, and all the joy that it can bring. She loves it. She really enjoys dancing. She explained to me that she really can't hear the music anymore, but she can feel it in her feet. She tries her hardest to keep up with all the moves. It really is just beautiful to watch her enjoy music so much.
So today, I am doing ok with the decision. I guess. We will see where we sit tomorrow. But Brianna is the one that matters. Hopefully this will work as well as the doctors seem to think it will. From there, hopefully she will be happy with my decision for her as she gets older and starts to understand it more. Things can only get better, right?

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.