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 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: and the assembly is at 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