Wednesday, October 31, 2007
Halloween!
The best part about Halloween is that you can dress your kids up, and they're too young to say anything about it!
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)!
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!"
Sigh.
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).
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!"
Sigh.
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.
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.
Recommendations:
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.
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.
Recommendations:
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
Diagnosis
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!
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!
Background
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...
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
Testing to see if this posts to the blog. Nolan was born in August 2007 and has bilateral mild to moderate hearing loss.
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