Listen Up

Update on Broken Aids

siachini — Fri, 25 Sep 2009 14:20:00 +0000

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!

siachini — Fri, 11 Sep 2009 00:20:00 +0000

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?

siachini — Thu, 10 Sep 2009 04:40:00 +0000

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

siachini — Thu, 10 Sep 2009 04:10:00 +0000

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

siachini — Sat, 05 Sep 2009 03:42:00 +0000

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:

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.
Three different requests to have ear molds redone because of audiologist error.
The inability for our original ENT to explain our Connexin 26 diagnosis to us.
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:

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

Our ABR is set for September 8th.

Abigail Turns One

siachini — Sat, 29 Aug 2009 18:30:00 +0000

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
.

Can I get a mmmmmm.

siachini — Sat, 08 Aug 2009 03:14:00 +0000

We have been working diligently to encourage Abigail to increase the kinds of sounds that she is making, but still have not heard any of the typical consonant sounds that you hear from a baby her age. One of the first sounds that you can expect is the “b” sound, perhaps in the form of “ba” to refer to her bottle. Shortly after that the “d” for “da da” and the “m” for “ma” appear and before you know it your little one is speaking jargon (which I recently learned is an actual technical term for that period of time when your baby babbles with such inflection and tone that it sounds like she’s having a conversation in a foreign language.) I have been plugging away at momma, but I would settle for a “ba” or even a “da” at this point. While she has progressed developmentally in some areas of speech–she has engaged in repetitive sounds (the ah ah ah sequence) and in back and forth style verbal play–she is still exhibiting a true speech delay.

We will be able to start medical model speech therapy (this is the type of speech therapy where the therapist actually works directly with Abigail to stimulate speech sounds, while the consultative approach consists more of the therapist providing suggestions to Ben and I on how to encourage her speech at home) in just a few weeks when Abby turns one. I am trying to decide on where to start her speech therapy. There are a few local outpatient centers here that I can try, but much like everything else in this process we are totally new to this and I’m not sure how to know if I’ve chosen a good speech therapist or not. Luckily my sister-in-law is very versed in speech therapy (she has a little boy with Apraxia) and she was able to provide me with some great guidelines:

A good speech therapist should have a theory and process that he/she is able to explain to you regarding your child–this is the most important quality.
The speech therapist should explain how you can continue what he/she is doing during the session at home.
The speech therapist should be open and receptive to any ideas/concerns that you have regarding your child.

While these are just the basics, they are at least a good starting point for us. While I would like to explore speech therapy at Cincinnati Children’s so that all of her care is centrally located, I just can’t justify driving 45 minutes each way once a week without at least trying a few of the local places.

Working on signs

siachini — Mon, 03 Aug 2009 02:57:00 +0000

Incorporating sign language into our daily routine has been very difficult for us as a family. After using only our voices to communicate for roughly the past 29 years, Ben and I have to really work on signing to Abigail. Remembering to do this is one of the most difficult hurdles we have to overcome. While our signing vocabulary is expanding every day, we still are not signing to each other or to Benjy regularly. We often forget to use our signs in key teaching moments like at dinner or bath. Our hearing therapist and deaf mentor had some great ideas that we are going to implement over the next week to help us get comfortable with signing:

Establish a quiet time at dinner–even if just for ten minutes use only your signs to communicate. If this means all you say is please and thank you or dinner’s good–that’s fine. Abigail’s first language is visual and she will be focused intently on your visual communication.
Put of sign flash cards in various areas of the house that can serve as key teaching areas for both Abby and Benjy–the bath, the play room, the dinner table, the mudroom. Each area can emphasize 1 or 2 signs to start and the cards will serve as reminders to use our signs as well as our voices to communicate.
Sign to each other and to your family–if you don’t know a word, oh well! The more you practice, the more natural signing will become to you.

We plan to put these techniques to practice over the next few weeks and hope that it will help us to sign more often. Learning sign language is hard, but remembering to use when you’re hearing is even harder.

Deaf Mentor Services

siachini — Thu, 30 Jul 2009 02:29:00 +0000

This past week we had the first meeting with our new Deaf Mentor here in Ohio. We received deaf mentor services in Pittsburgh while Ben was deployed and I thought that the help and guidance that I received was vital. Since returning to Ohio not only have I missed these services, but also I feel that we would really be able to benefit since our family is whole again. RIHP (Regional Infant Hearing Program) was able to connect us with a new deaf mentor and we have services up and running again. I would highly recommend obtaining this service if it available to you–it plays a key role in introducing your family to the deaf community. Since we are a hearing family, we knew next to nothing about deaf culture or about what life is like when you’re deaf, what life will be like for Abigail. There are no wrong or inappropriate questions when it comes to your deaf mentor–just answers, answers for anything that we as hearing parents might wonder about.

I learned so many things that I had never even thought of, but probably the most important thing that I learned was that I didn’t have to be scared of the deaf community. It didn’t matter that I was just learning ASL, it didn’t matter that I still talked while I signed and it didn’t matter that we were hearing and they were deaf. Everyone that I met was so eager to find out about our family and we were so eager to find out about others.

Some people have questioned our decision to become involved with the deaf community since Abigail isn’t really deaf, she’s hard of hearing. My response to that is that she’s not really hearing either, she’s hard of hearing. We believe that she should be involved with both the hearing community and the deaf community because she falls somewhere in between. We could decide not to teach her sign language, we could decide not to take her to deaf community events, we could decide to ignore the fact that she has a hearing loss altogether. But it still wouldn’t change the fact that she has a hearing loss and as her parents we want to provide her with every tool possible so that she can succeed.

Results of the Developmental Assessment

siachini — Mon, 20 Jul 2009 17:40:00 +0000

We recently had our IFSP and received the written reports from the various evaluators that were present during Abby’s assessment. The physical therapist determined that there was really no concerns about her gross or fine motor skills and that her size was probably the biggest inhibitor to her crawling. (She’s a large baby who likes to eat!) The speech therapist and the EI both confirmed our thoughts that she did have a speech delay-approximately a two month delay. Although this might have been expected for a baby with hearing loss, it is certainly not what we strive for and she will be held to the same communicative milestones of a hearing baby. The major concern for her speech development was her failure to babble–i.e. no repetitive sounds like ah ah ah, no consonant sounds, and no back and forth “game-like” communication. Why this might sound silly, these beginning sounds are the basis for compound sounds, then identifying sounds, and so on and so forth.

The speech therapist gave us a Nuk brush to stimulate her tongue and mouth in hopes that this will lead to a greater production of sounds. We also are going to continue to encourage the “back and forth” game play with a variety of sounds. One of the things that Ben and I learned during this IFSP is that any signs that she learns to use will count toward the “15 by 15″ count. (This is a very general guideline that a toddler should use 15 words or signs to communicate by 15 months.) We are going to continue to sign to her regularly and will begin medical model speech therapy at about 12 months.

So, the IFSP conclusion…

We will continue to have our hearing therapist meet with Abigail once a week;
Our EI will come every other week to monitor Abby’s progress in other areas of development;
The speech therapist will come once a month to visit Abigail and provide us with ideas to encourage her communication;
We will receive the services of a deaf mentor to help us build our sign language vocabulary and work on ways to incorporate signing into our daily lives; and
We will begin medical model speech therapy at 12 months.

IFSP success for now at least…