Tuesday, December 18, 2007

All I Want For Christmas...

..Are some Unitrons! We picked out Nolan's hearing aids today- Unitron Element 8's with brown BTE cases. We were looking at some of the colors, but decided to go with the bronze-ish brown cases so that he could choose any earmold color and not have it clash. We're going with blue-and-white swirl for the earmolds this time around.

We get to pick up the aids on January 9th. Only 3 weeks to go before he can hear better!!!!

Wednesday, December 12, 2007

Toddler Signs

This isn't hearing loss related, but does involve sign language so I thought I'd post it here.

We've been working on some sign language with Matthew (not for hearing loss reasons- apraxia runs in this family and the kid simply can't talk yet). It's been alleviating a lot of frustration, though a recent "conversation" went as follows:

Mommy: "Matthew, what do you want for breakfast?"
Matthew (signs): Candy.
Mommy: "No candy for breakfast. What ELSE do you want?"
Matthew (signs): Cookies.
Mommy: "No cookies before lunch. Do you want pancakes?"
Matthew: "Aaahhh!" (his version of yes).
Matthew (signs): Cup.
Mommy: "What do you want in your cup? Juice or milk?"
Matthew (signs with a big grin): Candy!!


The amazing thing is that three days ago this conversation wouldn't have been possible. At two years old the kid can only say about 4 words (monosyllabic and not clearly, but he does have four words). The only thing I can hope for is that Nolan skips the apraxia so we don't have to deal with that AND hearing loss. We'll deal with whatever comes our way, though!

I'll post a video of Matthew signing if I can get him to cooperate. Two is generally not a good age for cooperation!

Update: I got a video, but he is in constant motion. He is a bit like a hurricane- as evidenced by the toys strewn around our family room (grin):

Friday, December 7, 2007

The First "Explaining."

I figured we wouldn't have to explain about Nolan's hearing loss until he had aids and the situation became more "visible." We took Matthew to get a haircut last night- his first real one! The employees all came over to coo at Nolan. Nolan, completely oblivious, just stared blankly forward. One person commented that he had eyes only for his mama. I just smiled and Nolan just stared. Another person asked his name and started to call to him, 'Nolan! What a cute baby! Nolan, you're so cute!" Again, Nolan kept staring forward with no clue that these women were fawning over him. "Wow, he really just keeps staring!" was the comment. Then they were REALLY trying to coo to him to get a reaction. I finally said- "he's hard of hearing. You have to get in front of him to get a response- he has to see you." Sigh...

I'm not sure if Nolan really can't hear the voices or if he just has no clue that they "mean" anything and thus doesn't turn to them. From the hearing loss simulator results, he probably can't hear them. Only 2 weeks until we get to pick out his aids and get the impressons made. I am so excited to get his aids in early January. Soon he will be able to hear better!

Thursday, December 6, 2007

IFSP meeting

We had our IFSP meeting for Nolan. It was an interesting meeting because Matthew kept sneaking into the living room to play with the nativity set we have. I wonder what the EI coordinator thought when I said, "stop hiding the baby Jesus!" That kid loves the baby Jesus and carries the little statue around our house. We're often missing the main character in the Christmas story, lol. Anyway, Nolan will get speech therapy twice per week and we have established some goals:

Begin babbling
Turn and respond to voices
Start to recognize and respond to environmental sounds (i.e. doorbell)
Begin to vocalize needs as demonstrated in pitch of cries (i.e. hungry, mad, etc)
Vocalizing more to identify/recognize people/objects (e.g. mamama dadadada)

These are goals for the next six months, so these are things he should be doing by the time he is nine months old. We'll start the therapy sessions in January, because we're off to California and Utah for the latter part of December. Skiing and free babysitting, here we come!

Tuesday, December 4, 2007

Latest Report from the Audiologist

We finally got the results back from the confirmatory ABR. We're no longer mild/moderate but squarely in the moderate range. It doesn't really change much, though, since the result is essentially the same (hearing aids).

His right ear is now registering a bit worse than his left (it used to be the better ear). Our results from October 24, 2007 were:

Right Ear:

500Hz= 55dBnHL

Left Ear:

500Hz= 60dBnHL
1000Hz= 50dBnHL
4000Hz= 35dBnHL

Now they are:

Right Ear:

500Hz= 60dBnHL
1000Hz= 60dBnHL
"click"= 35dBnHL

Left Ear:

500Hz = 55dBnHL
"click" = 35dBnHL

We weren't able to get as much information on the left ear because Nolan was not cooperating and kept crying/pulling off the leads, lol. The summary is that Nolan has moderate sensorineural hearing loss sloping upwards to normal bilaterally. Hey- only a few weeks until we get those impressions made! I really can't wait to get him amplified!

Monday, December 3, 2007

Way cool hearing loss simulator!

So, I have been going nuts wondering what Nolan can and can't hear. All of the regular hearing loss simulators on the web are for high-frequency loss, and can' t simulate a cookie-bite or reverse-slope loss. THEN someone on the listen-up listserv told me about this program which can simulate any type or level of hearing loss. They have generic settings, and you can also manually move the bars to get the loss by frequency!

I downloaded it and have been having some "fun" playing with it this morning.

It definitely gives me a better idea of what Nolan can and can't hear (he is actually missing quite a lot).

Friday, November 30, 2007

Nolan's EI Evaluation

Evaluating a three month old is rather interesting- he is so young they just asked me a series of questions to determine where he fit into the developmental guidelines. He was at or above age level in every area but speech and language. He actually does have a 33% delay in speech and language (registered as a 1 month old) so he qualifies for EI on the basis of his diagnosis AND by delay. Once we start amplification and EI services, he should start to catch up. We'll start with a speech therapist once per month (probably- we don't get our IFSP until December 6) and increase the therapy sessions as he gets older.

They thought Matthew would probably qualify for speech services, too, so we'll definitely have him re-evaluated in January (when he is a full 2 years old). I am so glad these services exist for kids who need them- an early boost can help them succeed in later years.

Found another free resource

I love finding free resources- especially since we're so new to the world of hearing loss. Here's one offering a free parent kit explaining oral-deaf education. It even comes with a free DVD.

Wednesday, November 28, 2007


I never thought I'd be buying "accessories" for my son. Now that we're at the point of actually getting hearing aids, strange questions begin to enter my mind. Like the rain. Water is not good for hearing aids. We live in an area that is usually raining or snowing, and when it isn't doing one of those it is HUMID! Panic set in! Thank goodness for the listserv at listen-up.org. The wonderful parents there assured me that a hat and/or a hoodie is usually enough to keep light rain from causing harm to those expensive little hearing aids!

I'm thinking of buying some baby ear gear They come in all sorts of neat colors and help keep everything dry, clean, and together. Just in case Nolan decides to eat his aids, for instance.

Then there are the acclaimed pilot caps from Hanna Anderson. I first saw these on Mari's blog .

And what if those blessed aids get wet? Well, there is the Dry And Store which will dry them out and usually restore function. From what I've heard, they also work to restore function to remote controls and other electronics inadvertantly doused with water!

I'll have to see what comes with our hearing aids, but I am definitely buying some pilot caps at the very least. I have a feeling Hanna Anderson had no idea that hordes of hearing-aid wearing kids would be buying her hats!

And thanks to Mari's mom for telling me how to link items in a post! LOL.

Tuesday, November 27, 2007

Big Brother Hears

Ahh.. relief! Matthew can hear! He can't talk, but his hearing tested down to about 20dB in the booth with earphones on. In a soundfield, I think we got responses down to 10dB. We don't have to buy two sets of hearing aids- yay!!!!

On the other hand, the speech language pathologist there popped in to see him. He was disqualified from Early Intervention at 17 months because they take a "total language" score and his average score was too high. His receptive was in the 133% and his expressive was in the 66%, so his average score was, well- average! At two years old and only 4-6 monosyllabic utterances, though, he is well behind the curve. We'll have him re-tested through EI at a full 2 years (in early January- his birthday is Dec. 22). If he qualifies, we'll do speech through them. If he doesn't (due to high receptive)we'll try to get insurance to cover some sessions through the speech department at the hospital. In the meantime, we're trying sign language and picture boards.

It is interesting because the speech delay issues in our family might influence our communication decisions for Nolan. If he also has speech delay (such as apraxia) in addition to the hearing loss, it might be a while before he can speak. Matthew, with superb hearing, can't imitate simple syllables at the age of 2. Better get out those "Signing Time" videos!!

Monday, November 26, 2007

Another ABR and some progress!

We had the confirmatory ABR today (for the configuration and degree of hearing loss). The audi said everything looked about the same- I should get the official report in the mail in a few days. We scheduled the hearing aid fittings for December 18- we will get earmold impressions and decide on the hearing aid we want. With the reverse slope loss, we definitely need multichannel digital aids, so it will be a chunk of change. I have to contact the disabled children's program through Early Intervention to see if we will qualify for state aid. It's worth a shot! Otherwise we're out the money, which will be about $5000. Health insurance doesn't cover children's hearing aids. Go figure! I'm tired and not in rant mode, but it is ridiculous that a low incidence situation like congenital hearing loss isn't covered by health insurance!

The Early Intervention evaluation team also called and scheduled Nolan's evaluation for Friday. SO things are finally snapping into place for us. Matthew's hearing test is tomorrow. I seriously hope the kid is just speech delayed and not hard of hearing, because I don't think we could afford two sets of aids! Not to mention having to start the whole testing process over again, this time with a two year old. I guess we'll take things as they come! Hopefully he'll cooperate tomorrow.

UPDATE: Well, we don't qualify for state aid, so it looks like we'll be paying for this set of aids out of pocket. Argh.

Sunday, November 25, 2007

Christmas Shopping

Poor Nolan, having arrived only 20 months after his big brother, doesn't really NEED any toys for Christmas. We have several infant toys left over from Matthew, including various Roll-a-Rounds and squishy blocks. With Nolan's hearing loss, I thought about getting some toys that would be visually interesting that also have an auditory component. I found the "Wave Drum" by Edushape that has a clear panel and beads that dance when the drum is sounded. Target sells this one, so I picked it up for Christmas. I also saw a rainmaker (with colorful beads) that I might pick up. Of course, he is also getting more traditional baby toys, but I might as well pick up ones that are going to be helpful to his specific needs as long as I am out shopping!

I also found some educational supply stores-




There is also a catalog by Toys R Us that promotes toys for kids who need extra help in specific developmental areas. I'll have to look up the link for that one.

Tuesday, November 20, 2007

Cleaning house for nothing...

Just my luck that the Early Intervention evaluators called AFTER I had cleaned everything to cancel our appointment tomorrow. I am glad Nolan was identified so young, and that I pushed the evaluations to start now, because all the delays/cancellations/postponements can push things out enough as it is.

The wrap-up meeting and implementation of the IFSP is supposed to be on December 6th. I doubt we're going to meet that timeline- they would have to evaluate next week and next week is already pretty tight (Nolan's ABR in Buffalo on Monday and Matthew's eval on Tuesday, not to mention playgroup, MOPS, etc. that I have planned). Luckily I can always cancel going to MOPS and the playgroups.

There are always two evaluators that come out- a special ed teacher and the speech language pathologist. The special ed teacher is out with a family emergency for an unknown period of time, so we can't schedule the evaluation right now. I'm really just venting, but it gets very stressful when you know you're dealing with a child's development and you know your kid is going to need intervention to hear and develop appropriate language skills.

Really, I'm not very good at waiting! Hearing loss teaches you patience - waiting for EI, waiting for a definitive diagnosis, waiting for hearing aids... I just don't want the process to take so long that we get intervention after that critical six-month mark, though I know it is a possibility (with the rate things are going).

Update: The early intervention coordinator called to ask if Nolan had been evaluated yet. I gave her the story, and she said she would call the evaluators on Monday, and if they didn't call me back with an evaluation appointment by Tuesday to let her know. The wrap-up meeting is still scheduled for November 6, so hopefully everything will fall into place by then. By law, it has to.

Friday, November 16, 2007

Another test down...

I took Nolan in for his EKG today. This has been the easiest test so far- I'd rather do fifty EKG's than one ABR! It took all of five minutes (total, including dressing and undressing him) and we were done. We won't know the results for a while, though I don't suspect they'll find the long QT syndrome. That generally occurs with severe or profound deafness, and Nolan's moderate loss would be unusual to see with Jervell-Lange-Neilson syndrome (and yes, I have been googling WAYYY too much).

The results are being forwarded to a pediatric cardiologist named Dr. Jingle. If I ever meet the man, I will be highly disappointed if he doesn't have a pointy hat and bells on his shoes. It would seem at least one of our doctors is themed for the season!

Thursday, November 15, 2007

EI Evaluation and Acronyms

We have our Early Intervention evaluation date set (the 21st of this month), so it looks like I'll have to vacuum REALLY well this week! I wouldn't want the evaluators seeing all the chewed up crayon (since Matthew would rather eat them than color with them) and stickers (another favorite snack) that get smooshed into the family room floor!

I was reading some email today and realized how many acronyms I have learned and acquired since Nolan's diagnosed hearing loss, only one short month ago! Let's see (in no particular order):

ABR (auditory brainstem response)
EI (early intervention)
IFSP (Individualized family service plan- I think)
IEP (individualized education plan)
LI (Low incidence)
HA (Hearing aids)
ENT (Ear Nose Throat, as in doctor)
CI (cochlear implants- not something we need but something we've learned about)
ASL (American Sign Language)
SEE (signing exact english)
MCE (manually coded english)
BAER (same thing as ABR- Brainstem auditory evoked response)
LVAS (Large vestibular aqueduct syndrome)
TOD (teacher of the Deaf)
SLP (Speech Language Pathologist)
OAE (Otoacoustic Emissions)

I think I have a headache now. And I haven't even mentioned the communications choices that are thrust upon a parent new to the hearing-loss world! Anyway, only one week until the EI eval, two weeks until ABR number 7, and ??? until the HA fitting.

Monday, November 12, 2007

John Tracy Clinic

I haven't written a post about this yet, so I will now. I contacted the John Tracy Clinic shortly after we received Nolan's diagnosis (via their online sign-up for the baby correspondence course). Sometimes I feel a little sad, because we used to live in Oxnard- a stone's throw from LA and JTC! The correspondence course is great, though.

A week and a half ago I received a letter explaining the baby course and assigning Nolan a case number. We received the first part of the baby course less than a week ago. It came in a big manilla envelope stamped with "Book/Video for the Deaf" on it, which was a strange moment for me. While Nolan isn't profoundly deaf, his hearing loss is permanent and seeing this drove home that point for me. I was excited to receive the materials and immediately took out the booklet for lesson 1. There was a lot of interesting material there, and the book was broken up into sections. They have games to play with the baby to help with communication, normal developmental milestones, etc.

There is also a parent report to fill out at the end of the course, which I'm supposed to mail back in a month. Lesson 2 is already in the mail, but lesson 3 won't be sent until the report from lesson 1 is submitted. Since Early Intervention hasn't started yet, I've been using the JTC materials to work with Nolan. I've been keeping a report in a word document to send along with the parent report. So far, here is what I have written for Nolan's responses to the curriculum:

Date: November 8, 2007. Packet received today. Nolan is 10 weeks old.

Games Played: Quiet Time, Patty Cake.

Notes: Nolan smiles and coos. Sometimes it is hard to get him to make eye contact when talking, but once eye contact is made he reacts by smiling. He loves “Patty Cake” when I move his arms through the clapping/patting movements. He always smiles at the end when I move his arms like they’re clapping and say “Yay!”

Early Intervention set-up meeting was today. The wrap-up meeting will be December 6, when our IFSP is put together. The date for evaluation is pending, but will be completed before December 6.

November 9: Went to a mother’s group meeting at a local church. Nolan became extremely fussy and I could not calm him. I took him outside of the room and there was a loud rock band playing in the sanctuary. Nolan quit crying and was quite happy- as long as I stayed close to the sanctuary and he could hear the music. I didn’t go inside because I didn’t want the loudness to hurt his remaining hearing, but the beat carried well to the outside hallway.

November 9-11:

Nolan has a cold. He is rather cranky but still lights up when I smile and sing to him. I usually have him on a Boppy pillow when I read to my older son so that he is close enough to hear the words.

November 12:

Nolan squealed and smiled today- not a “belly laugh” yet but as close to laughter as a 2 month old can get! He is 11 weeks old. We played “Motor Boat Motor Boat go so slow..” with his legs. He liked this activity.

Saturday, November 10, 2007

Video of Nolan

I can't believe the little guy is 11 weeks old tonight! I've never uploaded a video before, so this is really just a test to see if my feeble brain can figure this out, lol...

Thursday, November 8, 2007

EI Ball Rolling

I have the Early Intervention ball rolling now, having filled out the paperwork this morning. It turns out that Buffalo Speech and Hearing (Nolan's audiologist center) can do the evaluation on him. They'll come to our home to do a full evaluation- he's only 2 months old so there aren't all that many milestones for him to hit or miss! The wrap up meeting is on December 6, so the evaluation will probably occur before Thanksgiving. Things are moving quickly.

We'll have Matthew re-evaluated in January for speech issues (unless he proves to have a hearing loss when we test at the end of the month). I'm getting anxious for Nolan's ABR at the end of this month and Matthew's hearing evaluation. I hope Nolan's ABR results come out similar to the ones we obtained in October (i.e. I hope there isn't any progression). I also hope Matthew's hearing is fine and that we're dealing with *just* a speech delay.

Wednesday, November 7, 2007

One medical test down...

And about a bazillion more to go! We did the urinary analysis today (looking for Alport's or brachio-oto-renal syndrome, I think). The results came back perfectly clear, which is great! I felt awful for poor Nolan because they had to catheterize him to get the urine. They debated over which catheter to use- a small one or a bigger one. I mentally screamed: use the small one! The small one! They did use the small one and got a decent sample on the first try, thank goodness.

They also said I could do the EKG locally. The nurse originally told me that we'd have to go up to Buffalo Children's to do this, but luckily that wasn't accurate. I can just walk into outpatient at our local hospital and have Nolan tested. Once we get that done, we don't have any more medical procedures until the repeat ABR on the 26th. The CT scan, possible MRI, and genetics evaluation won't happen until after the new year. The ENT wants Nolan to get a little bigger before we do those evaluations. The pediatrician said they'd sedate him for the scans since he is so young and not likely to hold still for the duration of the scans.

Our EI meeting is tomorrow, then we should be free of hearing-loss related stuff for at least a few days, lol!

Tuesday, November 6, 2007

Social Security or... ARRRGHHH!

To apply for state aid through the disabled children's program, you first have to have a denial letter from Medicaid. Easy, you think? Hahahahaha!

I called the phone number to our county Social Security office FIFTY times. I am not exagerating, it was fifty times. I would get dumped into a voicemail system, where Iwould leave a message to NEVER get contacted. Or I would get put into their main voicemail system (for the employees), where I couldn't leave a message. All I wanted was a denial letter, honest! I feel for people who really need Medicaid. They'd die of whatever disease struck them before getting benefits!

I looked online to see if I could apply and get denied that way. No dice. I had a horrible feeling I was going to have to drag my two children (both under the age of two) to the main office (which is an hour away by car). While looking online, I found out there was a SS office in my main town (not the number provided to me for the county office). I tried that number. Voila!

So, after countless phone calls and frustration, I got hold of the nicest worker at social security. I just wanted a denial letter, I told her. She took some basic information and the denial letter is in the mail. Yes! I never thought I would be so happy to be denied something, lol.

Next step: Contacting the disabled children's program and our insurance company (for a denial from the insurance company and hopefully some assistance from the program).

Friday, November 2, 2007

Advocacy for A04731 or S 171

As any parent of a kid with hearing loss knows, insurance does NOT cover or help with hearing aid costs. With each aid costing around $3000, and needing to be replaced every 3-6 years, this can really add up for a family. If you do not have medical insurance and qualify for medicaid, you are covered. If you are a working family with health insurance, you're out of luck. Insurance will pay to diagnose the condition of pre-lingual hearing loss, but will not pay to treat the condition.

There is a bill before the NY State Legislature at the moment which would require insurance companies to reimburse families up to $1000 for hearing aids every three years (every 2 years for kids under 16). While this won't cover the cost of hearing aids, it certainly would help! The list of state Senators is at: http://www.senate.state.ny.us/senatehomepage.nsf/home?openform and the assembly is at http://www.assembly.state.ny.us/. A sample letter is below:

Dear Honorable ( Assemblyman or Senator )

Legislation has been introduced that would require health insurance coverage of hearing aids ( Use A04731 if you are writing to your Assemblyperson) for all New Yorkers. I am writing to ask you to vote YES for this legislation.

Hearing Aids are extraordinarily important for people with hearing loss, and they have significant implications for a person's economic, mental, and physical well being. Studies have found that people who have significant difficulty communicating are often under- employed and are more susceptible to a host of emotional and physical disorders. Thus, the failure to cover hearing aids not only penalizes people with hearing loss, but also costs the government significant amounts stemming from under - utilization of its work force and increased spending on the other needs of employees with hearing loss. By supporting this bill you are ensuring that all people will have equal access to communication with their fellow citizens.

We all understand the importance of hearing aids to:
1. Children who need to acquire listening skills in order to develop spoken language.
2. Students who are in a school environment to achieve their greatest potential through education.
3. Those in the workplace who need to maintain their connection to their associates.
4. Senior people who need to interact and socialize with others through spoken communication.

There are currently one in ten people ( one in three for those over 65 ) with a hearing problem. It is important that our nation must begin to work through equitable coverage policies for aural rehabilitation services and hearing aids in a concerted manner by both public and private insurance payers. There is every reason to believe that this would be a very low cost benefit and should not noticeably affect premium or costs of doing business for the insurance providers or HMOs. We are only asking that hearing aids be on the same parity as eye glasses, etc..

Thank you,
your name

Wednesday, October 31, 2007


The best part about Halloween is that you can dress your kids up, and they're too young to say anything about it!

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Photo Sharing and Video Hosting at Photobucket

Photo Sharing and Video Hosting at Photobucket

Early Intervention

The audiologist from Buffalo Speech and Hearing called today (I love her). She gave us all the phone numbers to call to see about assistance for hearing aids. Health Insurance, unfortunately, does not cover hearing aids (even for prelingual kids with permanent hearing loss). There is a bill before the NY State Senate at the moment regarding this, but even if approved it would not go into effect until July 2008. Too late for us, anyway!

We have to call Social Security to get officially denied for Medicaid. We don't qualify, but you have to get the official denial before you can apply for state aid. Then we apply for state aid- if we qualify we should get some reimbursement. If we don't qualify through them, then it is just out-of-pocket. We have plenty of family to help us pay for hearing aids, but it would be nice to get some help here! I am also going to call our insurance company (Univera) to see if I can persuade them to cover hearing aids. It probably won't work, but is worth a shot!

I called Early Intervention and after some discussion (do you want to wait for his aids before starting therapy?- NO!) we decided on November 8 as the day to start the paperwork for Nolan's EI. He qualifies due to having a permanent disability as opposed to having a developmental delay. The coordinator said we'll probably only have visits once per month since Nolan is so young, and they'll evaluate how often he needs visits as he gets older. At least that ball is rolling!

Now off to call Social Security so we can get our official denial letter (oh, the bureaucracy)!

Tuesday, October 30, 2007

Speech Delay

Kiddo number one (Matthew) tried to say "bug" today. This is huge, since his entire vocabulary (at 22 months) consists of "hah" (hot), "da" (usually daddy), and "ba" (everything else). He's said "Mama" once or twice, but always while crying so I'm not sure if he's actually saying "mama" of if that's just the sound he makes while crying. His usual method of communication is point-and-whine, which is frustrating for all of us. So his "buh!" was a cool thing.

A typical Matthew exchange goes like this:

"whine whine whine CRY CRY CRY" while pointing.

Me: "Do you want your cup or a cookie?"

Him: "Ba!!!"

Me: "Your cup? You would like your cup? Here is your cup with milk in it."

Him: "Bah!"

Alternatively, it will go like this:

"Look, a kitty. Can you say kitty?"

Him: "Bah!" "Dat! Dada bah!"


Anyway, I've heard the following as reasons why he isn't talking yet:

1. He's a boy. Boys talk later. Just give him more time.
2. You always give him whatever he wants, so he doesn't need to talk.
3. Do you read to him? Do you talk to him? Maybe he's not getting enough stimulation.
4. It's easier for him to just point and grunt to get what he wants.

1. ARGH! Yes, he is a boy. He might just be a maturational delay case, but most boys have more than three monosyllabic utterances by this age.

2. We went through a phase where we withheld certain items until he attempted a word for it. Unfortunately, this just led to tears all around. We felt terrible. We can't always figure out what he wants anyway, so there are a lot of tears of frustration in our house.

3. We have 10 gazillion books in our house. We read everything from Marvin K Mooney to Brown Bear, Brown Bear. Anyone who knows me knows that I NEVER SHUT UP. Poor Matthew has had more language stimulation than any kid should have, lol.

4. I guarantee you, the point and whine method is not easier than saying the word. Since we often cannot determine what Matthew wants, we must guess until we either get it right, or he dissolves into tears (or tantrum).

I don't think he has a hearing problem (he can hear a whisper behind his back and a plane in the far-off distance), but we'll make sure he doesn't at the end of November. In a way, I almost hope he has a hearing loss because we'll get help for him. Otherwise, we're left to muddle through until he hits 3 and someone in preschool lets him get speech therapy through the school district (he doesn't qualify for EI because his receptive language is so high and they take an average of the expressive and receptive language scores).

Sunday, October 28, 2007

Cool Coincidence

I went to church today and was talking to a few people who knew about Nolan's failed hearing screen. During the service, there was an announcement that the former nursery worker was "retiring" so that she could attend the services. I wondered who the new nursery worker was going to be. I don't leave Nolan there, but Matthew can't sit through an hour and a half long service. With Nolan's future hearing aids, I don't think I could ever leave him there (the thought of a lost EXPENSIVE hearing aid alone makes me queasy).

I noticed a new little boy sitting up front with a cochlear implant (CI). I turned to my friend and asked her, 'Hey- who's his mom?" She told me his mom was the new nursery worker. COOL! If I ever need to put Nolan in the nursery, I have the confidence of knowing that she understands the needs of deaf and hard of hearing kids. Plus, she knows about expensive equipment! It was also interesting during a moment of silent prayer- her little boy piped up with, "it's so quiet in here!" It was kind of amazing that a deaf child could remark on how quiet the sanctuary was!

The lady in front of me overheard my conversation with my friend regarding the results of Nolan's hearing test. Turns out she's an ASL translator (she has a deaf sister and translates for the local school district). She offered ASL information and instruction. Yay! We live in a little town, so I wasn't sure how I was going to get in contact with someone who knew ASL (if we use that as part of our communication strategy). I'm a bit lost in all the turmoil that surrounds the diagnosis of prelingual hearing loss. There are a lot of decisions to be made, and communication options must be decided early on in the game. I do know I want to use some sign language at the very least, since Nolan could lose more hearing in the future (always a possibility). Plus, he can't wear his hearing aids in the bath, at the beach, etc. His ability to hear (even with aids) will be compromised in situations with a lot of background noise. Communication options, however, are something that we haven't had enough time to go over very carefully at the present time. Once I get in contact with Early Intervention, I am sure things will crystalize and we can begin moving along.

I did contact John Tracy to get their correspondence course (free to parents of deaf and hoh kids). I am SO glad the organization exists. I am also glad to live in a time where internet capabilities allow for the free exchange of information.

Saturday, October 27, 2007

Official Medical Report

I got the report from Buffalo Speech and Hearing in the mail today for Nolan. The results are a little worse than what the audiologist wrote down on Wednesday, but the effect is still the same (hearing aids). His hearing threshholds are:

Left ear:

500Hz 60dB
1000Hz 50dB
4000Hz 35dB

Right ear:

500Hz 55dB
1000Hz 50dB
4000Hz 30dB

The official report reads:

Tympanometry revealed normal Type A curves in both ears indicating normal middle ear function.

An Otoacoustic Emissions (OAE's) Study was performed in both ears. OAEs are frequently used to determine cochlear function, which allows us to infer about peripheral hearing acuity. LEFT EAR: Test results revealed reduced cochlear function from 500-8000Hz. RIGHT EAR: Test results revealed reduced cochlear function from 500-2000Hz with normal cochlear function from 3000-8000Hz.

Auditory Brainstem Response (ABR) was performed as a threshold search in both ears. Results are as follows:

Left Ear: Using air conducted clicks, best responses for Wave V were obtained at 35dB HL. Best responses to a 500Hz tone burst were obtained at 60dB HL. Best response to a 1000Hz tone burst were obtained at 50dB HL. These results are suggestive of a moderate sensorineural hearing loss sloping upward to normal.

Right Ear: Using air conducted clicks, best responses for Wave V were obtained at 30dB HL. Best responses to a 500Hz tone burst were obtained at 55dB HL. Best response to a 1000Hz tone burst were obtained at 50dB HL. These results are suggestive of a mild/moderate sensorineural hearing loss sloping upward to normal.

Summary: The ABR test results suggest that Nolan has a mild/moderate sensorineural hearing loss sloping upward to normal bilaterally. OAEs are fairly consistent with the ABR thresholds.

1. Physician to review test results.
2. Repeat ABR to confirm degree and configuration of hearing loss.
3. Nolan was scheduled to see an ENT today.
4. Make contact with Early Intervention for services.
5. Hearing aid evaluation pending next results.

Thursday, October 25, 2007


We went to have Nolan's hearing tested at a larger center, via a diagnostic ABR test. These tests are quite grueling, though not for the test itself. The baby has to be as motionless as possible, so they recommend you withhold food and sleep deprive the poor kid before testing. Trying to keep a hungry 2 month old awake on a 2 hour car ride is not a lot of fun!

We arrived at the center with our toddler in tow, to wait out the appointment with Daddy in the waiting room. The audiologist took Nolan and me into the testing room, and explained they had new ABR equipment. No sleeping necessary! It's a vivo-link ABR testing unit- they can even do ABR testing on toddlers as they play or watch a video. Incredible! Of course, I had just starved and sleep deprived Nolan for nothing, but at least I know for the future!

She tested the right ear and generated near-normal responses at 4000Hz. I breathed a sigh of relief. The testing continued, and when she wasn't quite done after an hour (still on the right ear), I started to think there might be a problem. She said he tested at 55dB at 500Hz, but they apply a correction factor and she called it a 40dB loss. He tested at about the same level at 1000 Hz.

She decided to run OAE (Otoacoustic Emissions testing) to check the function of the cochlea. This test sends sound to the cochlea and looks for an echo response. If it is there, the cochlea is intact. If it is absent, then the hair cells in the cochlea are damaged or missing. Nolan had no OAE's in the low and mid frequencies. They were present at high frequencies, but diminished. She expressed some concern that he might have a progressive loss, but we won't know until it, well, progresses!

The left ear tested nearly identical to the right. A reverse-slope in the mild-moderate range. A tympanogram revealed a healthy eardrum. She said he had mild to moderate sensironeural hearing loss and would need amplification. Unfortunately, she wanted to repeat the ABR (here we go for ABR number 7!) to verify the results. She also wants to keep a close eye on his responses in the high frequency ranges.

We ran from that appointment to the ENT, who gave us prescriptions for an EKG and urinalysis. Some hearing loss is associated with syndromes, so we have to begin ruling out each syndrome. She then took a look at Matthew and began talking to him. Matthew is big brother and is 22 months old, with a grand total of 3-4 words. When I explained he was speech delayed, she was flabbergasted (I daresay irate) that the pediatrician had not ordered a hearing test for him. I told the ENT that the pediatrician wanted to wait until he was 2, because boys are often slow to acquire language. She picked him up and left the exam room with him, calling over her shoulder, "I can't in good conscience let you walk out of here without a hearing test for big brother!" Wow! This doctor cares! Unfortunately, their audi was overbooked with patients. She let us go home, with STRICT orders to force our pediatrician into testing his hearing. It will be interesting to see if Matthew has some hearing loss - these things are often genetic and with the delayed speech... let's just say I have odds on finding a low frequency loss with this kid. Of course, my husband had apraxia as a kid, so it could be anything.

We are now scheduling all of our future appointments. We need a urinalysis, EKG, and I have just scheduled Matthew's hearing evaluation. We have another ABR scheduled for Nolan and another ENT appointment after that to schedule a CT scan and other testing. We are going to be busy with doctors for a while!


Nolan was born on August 27, 2007 after a grand total of 3 hours of labor. It was a textbook pregnancy, easy delivery, and he was a wonderful, perfectly healthy baby. The OB/Gyn discharged me a day early so that we could go home and be together as a family. I had no inkling there could be any problem at all, until the nurse came in and said we couldn't leave "just yet." Nolan hadn't had his hearing evaluation, apparently. It turns out she wasn't quite telling the truth here- he had his evaluation but had "referred" and they needed to repeat it prior to discharge. An hour later she returns and says that we need to stay, because Nolan had "referred" on the test and she needed to have it repeated by the audiologist. She told us not to worry, that this is often caused by fluid in the ears or vernix from the birth process.

The audiologist came down and a little while later came in to say he had referred again. She told us that the nurses are allowed to run the test twice, and after that they have to call the audiologist. So Nolan had "referred" with both ears at 35dB on three separate automated ABR (AABR) tests (a measure of brainstem response to the auditory nerve). She said it could be fluid, and not to worry. I asked if there was any fluid in his ears, and she said there was no fluid evident. Hmmm...

We went back to the hospital two weeks later for a fourth AABR to confirm the screening results in the nursery. He referred again bilaterally. Then she ran a fifth AABR at 40dB- Nolan's right ear failed and his left ear passed. She referred us on for a diagnostic ABR at a larger hospital, since diagnostic ABR tests are not performed in our small(er) town. She said not to worry, it could be fluid in the ears. Yeah, right! Then she gave me several brochures on permanent hearing loss and her email address.

We scheduled the diagnostic ABR for October 24, and had to wait for what seemed to be an incredible amount of time. In the meantime, we noted Nolan startling to loud noises and seemingly responding to our voices. We were convinced there must not really be a hearing loss, and maybe it was just quirky screening results...


Testing to see if this posts to the blog. Nolan was born in August 2007 and has bilateral mild to moderate hearing loss.