Sunday, October 31, 2010

We have a surgery date!

After a million phone calls and much harassment on my part, we have a tentative date for Sophie's CI surgery! Barring final insurance approval and healthy ears, she will be getting bilateral implants on 12/16! So exciting! This will be 10 days short of her 9 month birthday and she will be activated and hearing by the time she is 10 months old!

I really feel like a weight has been lifted for now. My apologies to Dr. C's office, St. John 's audiology, and the customer service line at Anthem. I know you all know me by name and are sick of me calling. Am I a pushy mom? Maybe... Crazy mom?? Hmm... I guess it just depends on how you look at it. I'm just advocating for my little girl.

We had our last audiology session before Sophie's surgery on Friday and she did great. It was an aided testing session and she tested similarly to her last aided session. With both hearing aids in, she is responding to speech at 65dB. This means that she can tell that we are talking to her and she can probably differentiate voices, but she cannot really understand what we are saying. It would be difficult for Sophie to learn speech with just her hearing aids.

She is also doing a great job at telling us when she hears a sound. This will be very important when she gets her implants and they have to be programmed and mapped. Everyone at Moog is very encouraging and calls her a little genius. They say that she is learning better than many of the older babies that attend school there. Not only is this comforting because it gives us hope that her speech delay will be minimal, but it is also an indication that her hearing loss is non-syndromic. Since we still do not know what the cause is, we are somewhat apprehensive that she may encounter other developmental delays that may hinder her ability to learn and to speak. However, based on what she has shown us in her first 7 months of life, she is a smart little cookie. We are quite hopeful and very proud of our baby girl!

Here is a picture of my little ladybug. Happy Halloween everyone!

Saturday, October 23, 2010

No pity for us, please!

All week I have been replaying I conversation I had with a stranger that has been bothering me. Last weekend, Sophie and I went out out shopping. We were in line at a retail store in the mall and Sophie was happily bouncing around in her stroller, playing with her toys, and grinning ear to ear. When we got to the register the sales clerk looked at Sophie and cocked her head to the side, "I hope you don't mind me asking, but what is wrong with her ears?" "Well, she's deaf," I said. "Oh no, I'm so sorry." "Don't be," I muttered under my breath. And that was it.

Now, I always welcome curiosity and am willing to talk about Sophie's hearing loss with anyone that we meet. I always explain how we found out, talk about her hearing aids, and the fact the she will be getting cochlear implants. For some reason that day, I had no desire to say anything else. I know that I was rude, but I just felt so incredibly tired of being positive and trying to make everyone else believe my daughter is going to be fine. It is heart-breaking to know that people look at Sophie, take note of her hearing aids, and feel sorry for her. They do not see a sweet, smiling, bouncing, baby girl as I do, but a disability. This is a struggle that she will always have and I will not always be there to defend her. She's deaf. DEAF. Although we have this amazing technology to help her, she will always be deaf.

I think the worst part about this journey is the stigma that is associated with deafness. Assumptions are made and she is stereotyped as soon as someone sees her hearing aids. If I had a quarter for every time someone asked me if we are teaching her sign language, we would be well on our way to having her tuition paid in full!

One of my goals is to not let Sophie's hearing loss define who she is. And I don't. However, it is harder to influence other people, especially because Sophie is still so young and cannot really "show" others that she isn't much different than them yet. Some days are harder than others and I obviously had a bad day last weekend, but I'm going to try my hardest to make other people see what I do-an amazing, smart, and joyful little girl that just happens to hear differently than we do!

Tuesday, October 19, 2010

Got to keep her "talking"!

One of the things we have been told to expect about Sophie and her hearing loss is the fact that she may go completely silent sometime in the very near future. Babbling and cooing in infants is innate, it is not learned. Babies become verbal at a very young age and their babbling and cooing eventually becomes language. However, when babies with hearing loss do not get reinforcement from their babbling, they may stop altogether. Deaf babies have even been known to cry silently! If Sophie cannot hear herself or us talking to her, she will most likely stop. We have been told that this may happen between 6 and 10 months old and we are doing everything in our power to prevent this from happening.

Part of Sophie's therapy is giving her as much visual reinforcement as possible when she babbles and coos. I do so by making excited and funny faces whenever she "talks". I also mimic the noises she makes with the hope that she hears me. Another major part of her therapy is talking to her. It sounds simple, but it is actually pretty difficult. Ideally, I should be narrating everything to her. For example:

"Sophie, let's change your diaper. Are you wet? Let me see your diaper. Oh my goodness, you are wet! Your diaper is wet! You need a new diaper. Hand Mommy a diaper. Are you ready for a clean diaper?Mommy is putting on your diaper now. Wow! We have a clean diaper!"

Let me tell you, when you apply this to everything you do in a day, it is exhausting!!! The funny faces and narrating can also look very strange to someone who has no idea what I am doing or why. I'm sure I've gotten several strange glances as I walk through the mall or the grocery store. ;)

Sophie is still pretty verbal, but that could change any day. I'm just going to continue to do my best and not get too discouraged if she does stop babbling. Sometimes it's extremely difficult when I'm tired or just not in the mood. It can be very hard to get enthusiastic, but I know I have to. If we are lucky and she never stops babbling, then her speech delay will be lessened and the hard work will have paid off!

Here is a video of Sophie blowing raspberries and "talking" to her toys. In the beginning, she *probably* even responded to her name!

video

Friday, October 8, 2010

Possible December Surgery!!!

I've been meaning to post an update and let everyone know how Sophie's last ENT visit went, but I've been a little under the weather lately. I apologize!

We met with Sophie's ENT on Monday and discussed her CI surgery timeline. We have made all of our decisions and are ready to go! He is submitting the paperwork to our insurance company and we have to wait for approval before we can schedule her surgery. If everything goes smoothly, we may be looking at a December date! The ENT believes that Sophie is big enough to tolerate the surgery and is confident that the procedure will go smoothly. Like I stated before, he is a very conservative surgeon, so I fully trust his judgement.

At this point, it is a waiting game. I left the ENT feeling excited, but a little uneasy. It is hard for me to just sit back and wait. I feel like I should be doing something to push things along. There are a lot of plans that need to be made with her surgery (holiday season, taking off work, etc) and I want to have everything in place. Jared says that I need to relax, but I just have so many worries going through my head! Easier said than done... I really hope the insurance approval goes through quickly and we don't encounter any problems. If anyone has experience in this area or any pointers, I would love for you to share!

Sophie is doing well! She cut her first tooth and has been pulling out her hearing aids less often. I wonder if teething has something to do with it?? She is also getting ready to crawl! Time is going by so quickly!