Abby LIVE

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Update on Broken Aids

I cannot express the great sense of appreciation that I feel for our new audiologist at Children's. She is a wonderful asset and she is already an incredible advocate for our little girl. We received a call from her Wednesday night that she had news-both good and bad. She had consulted with a few other audiologists and everyone agreed that Abby's hearing aids were simply not powerful enough to allow her to hear all the different frequencies of speech. This conclusion was based on the results of Abby's second ABR, which indicated that her residual hearing levels were 10 decibels less than her original diagnosis. Her current aids were being maxed out and still could not reach the highest frequency speech sounds--what this means is that even at their max power her aids would not allow her to distinguish between "sail" and "pail." Since our insurance only pays for hearing aids once every 3 years and the aids that she was recommending were $800 more expensive than her original ones, she was prepared to tell us that we will have to pay out of pocket for the upgrade.

However, she felt that these new aids were really what Abby has needed from day one and that it was not our fault that she was not given the equipment that she truly needed. Our insurance would have paid for these more expensive aids in the beginning, but since we had already filed a claim for her original aids we were pretty much out of luck. Our audiologist was not ready to accept this and agreed that we should not be held responsible for the audiological care that had failed Abigail. She called the rep from Oticon (the company that manufactured Abby's hearing aids) and was able to work a deal between Dayton Children's and Oticon to refund the original order and replace them with brand new, more powerful aids.

We feel so blessed to have such a wonderful professional on our team!

I can't believe it!

Today was a stressful day. I decided to run a few loads of laundry while the kids were playing nicely together in the toy room. After a few minutes Abby started screaming. I rushed in to see what was wrong and there was Benjy trying to hold her back by the elastic strap of her hearing aid clip. I have seen him do this a few times before and each time he has been reprimanded swiftly for it. I was just about to yell, "Let Go!," when I saw it happen. The elastic clip snapped, her hearing aid flew up in the air while the ear hook (the plastic part of the hearing aid that the earmold is connected to)was still attached to her ear mold. He had pulled so hard that the whole thing cracked right in half! I screamed--partly because I wasn't sure if he would live to see dinnertime and partly because I had no idea what else to do. I couldn't believe it--a three year old managed to break a fifteen-hundred dollar piece of equipment in the blink of an eye and even worse, right in front of me.

I spent the next thirty minutes on the phone with our new audiologist figuring out the next step. Lucky for us Oticon (the company that manufactured Abby's aids) warrants the hearing aids for one year--no matter what. The means that if Abby throws them out the window on the interstate--they'll replace them, or if in our case her brother decides she's a horse and can be controlled with her built-in "reins" and the aid splits right in half--they'll replace them. Thank God we're still in the warranty period. We will have to make an unexpected trip back down to Cincinnati tomorrow to fill out our warranty paperwork, send the broken aids in (we are going to send both in to be checked and/or replaced) and fit a set of loaner aids for Abby. Most pediatric audiology departments run a loaner program for this exact purpose. Her loaner aids will be programmed to her loss and will help her to stay on track while we wait the two-three weeks for her aids to be repaired.

As I type this I am sad, looking down at this pearl pink hearing aid cracked in half. Her aids are as much a part of her as her big blue eyes and I wonder how lonely she must feel when she can't hear our voices.

What does Abby's loss sound like?

This video is a great way to understand Abigail's hearing loss. The first time I saw this I cried because it made Abby's loss real to me. I finally understood what life for her would be like without her aids. While her hearing aids will help her greatly in understanding and developing speech, she will still struggle. It will be hard for her to understand you unless you are talking in front of her; in a crowded room that is noisy it will be almost impossible for her to distinguish your voice from the other noises in the room and she will have to work very hard and train her ears to hear the difference between the highest frequency sounds such as "s" and "sh."

As you watch this video you will see the audiogram in the lower right hand corner shift from mild loss to moderate loss to severe loss. Abigail has severe (65-75 dB loss) bilateral (both ears) sensorineural (nerve damage) hearing loss and this is what we sound like to her.

Abby's Second ABR Results

The day started out rough--we had a terrible storm the night before and the roads were very foggy in the morning. The kids were packed and we were ready to head out at about 7 am. Abigail wasn't allowed to have anything at all after 7 am, but was allowed to have about 4 oz of clear juice at 6 am. This made for a very hungry little girl on the almost 2 hour trip to Cincinnati (I hate rush hour traffic.) Of course it didn't help that her brother was drinking chocolate milk and eating glazed donut holes two feet from her.

We finally arrived and after an hour of paperwork (she had to be checked out by a couple of additional doctors because of her heart murmur--she is going to see a pediatric cardiologist next week) she was given the sedative. Benjy watched Lion King while I tried to rock Abby asleep. She was doing really well until she started to feel the effects of the medicine. That loss of control over her body really seemed to scare her and she began to totally freak out. After ten or fifteen minutes of trying to hold on to her, I called the nurses in to help me. We decided that the best thing to do was to wrap her in a blanket from the warmer and simply hold her down until she fell asleep. This was hard for me because she was screaming so loud, but if she didn't fall asleep with the sedative they would have to use general anesthesia.

The audiologist eased my mind a bit and explained that this sort of reaction is very common among kids with hearing loss. Since their hearing is impaired, their other senses are often heightened. This makes them especially sensitive to changes in their other senses and they can experience anxiety when they feel another sense has been impaired. After about twenty minutes of screaming she finally gave in and fell asleep. About 45 minutes later the audiologist brought us a new audiogram that accurately established the degree of her loss.

It turns out that while her first ABR indicated a moderate/moderate-severe loss and subsequent hearing tests had produced a mild/moderate loss result, her actual loss fell in the severe range. Her audiogram shows that without her aids she is not able to hear any of the sounds of speech and in fact she is unable to hear most normal conversations (typically occurs at 50 dB) without her aids. I was disappointed; not because her loss was more severe than we had originally thought, but that we had already wasted a year with poor programming for her aids.

Our First Trip to Cincinnati

Yesterday was our first appointment with our new Audiologist at the Mason campus of Cincinnati Children's Hospital. We decided to leave Dayton Children's after a series of mistakes were made:

1. Abigail's hearing aids have a rocker switch that controls the volume. For kids under the age of four, this switch is supposed to be disabled via the computer software that initially programs the aids. After eight months and two trips to see two different audiologists regarding the programming of her aids, we discovered that her volume controls were never disabled. Each time we cleaned her aids we were unknowingly raising and lowering the volume--a lot of very precious hearing time wasted.
2. Three different requests to have ear molds redone because of audiologist error.
3. The inability for our original ENT to explain our Connexin 26 diagnosis to us.
4. The polite refusal to repeat a hearing test because I thought her last test was not accurate.

We are very excited to get Abby's care back on track and this was just the fresh start that we needed. We started out the appointment with a brief history, records review and dove right into an unaided hearing test. It was again the same sound booth format as before (with two audiologists), but after about 20 minutes of testing the audiologist asked to stop so that we could talk. I had sensed that she seemed disappointed in what Abby was responding to, but I wasn't sure until she asked about Abby's ABR (Auditory Brainstem Response Test). Once she asked about that, I knew she had suspected that Abby's hearing loss hadn't been accurately mapped. She felt the best course of action was for Abigail to have a second ABR, this time sedated, so that we would be able to pinpoint her hearing ability exactly. These new results would allow for exact programming of her hearing aids across all frequencies.

We are quite nervous about sedating her, but know that this is a necessary step to her speech development. We feel confident that moving to Cincinnati Children's was a step in the right direction. We feel like we learned more from this two hour appointment than we have learned from an entire year of care at Dayton Children's. Our course of action is as follows:

1. Repeat Abby's ABR to determine exactly what her loss is;
2. reprogram her hearing aids based on her new results; and
   
3. meet with an Aural Rehabilitation Therapist to have an evaluation.

Our ABR is set for September 8th.

Abigail Turns One

Happy birthday to our dear little princess!

It's hard to imagine that you're one today--it seems just like yesterday that we welcomed you into our family. While it doesn't seem like we've already been blessed with you for an entire year, it has been a long journey. We will remember forever the first time we saw you, your first tear, your first smile, your first laugh, your first kiss. We will remember forever the first time we learned that you had a hearing loss--the fears that we had, the tears that were shed, the many questions that would follow. We've come a long way as a family and your smiles have given us all the strength to keep going. We hope that you will one day understand the decisions we have made and know that we are working as hard as we can to make sure you have every tool possible to succeed and be happy
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