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.