Looking Dicey

We're definitely heading up to the ENT tomorrow, but the pH probe is looking pretty dicey.

Dear (little) fever, please come down!

Audiology Report from Buffalo Children's

I received the official audiology report from Buffalo Children's audiology department. I am impressed it arrived so quickly! It states that Nolan has a moderately severe mixed hearing loss, has patent PE tubes (i.e. his middle ear ventilation tubes are working very well), and that he is an absolutely amazing kiddo. But we already knew that.

Since my friends/family are probably addled by all the charts, I'm going to explain Nolan's results- so my hearing loss bloggy friends can stop reading now. I'm pretty sure all of you are all too familiar with audiograms! Also, this will be boring. Fair warning.

For those not as familiar with an audiogram, it is a graph displaying "frequency" across the top. Frequency is pitch- it is like a piano keyboard rolled out in front of you. Middle C is at 250Hz, which is the lowest useful frequency used for human speech. 8000Hz is very high pitched- think of a shrill whistle (or the higher pitched sounds like "s" and "th").

The volume is placed down the side of the audiogram. It is recorded in decibels (dB)- children with normal hearing can hear from 0-15dB (adults with normal hearing can detect sounds from 0-25dB). A whisper is at about 30dB, conversational speech is at 55-60dB, and jackhammers are around 100dB.

I have placed Nolan's hearing levels onto an audiogram which has the sounds of speech placed onto it. Nolan's right ear is red, and his left ear is blue. He cannot hear any sounds above the lines. In other words, he hears almost no speech sounds without his hearing aids. He can hear shouting, dogs barking, and other loud sounds.


Audiologists like to know what is causing the hearing loss, so they test both the inner ear (how well the delicate hair cells in the cochlea are working) and the middle ear (the mechanical portion of hearing). The middle ear bones vibrate and transmit sound to the inner ear, and the inner ear hair cells move and transmit the sound information to the auditory nerve. If either system is "broken," sound will not get through to the brain. Problems with the middle ear are generally correctable, if the problem is caused by middle ear fluid or a malformed middle ear bone. Problems with the inner ear are not correctable.

A problem with the mechanical, middle ear function is called a "conductive hearing loss." A problem with the inner ear is called a "sensorineural hearing loss." Conductive hearing losses are treated with surgery to correct the problem, or hearing aids if the problem is not correctable. Sensorineural hearing losses can only be treated with hearing aids (or cochlear implants for severe-profound levels of hearing loss).

They test the "middle ear system" by placing a vibrating sound system on the head, called a bone oscillator. This sends sound directly to the inner ear (cochlea) and bypasses the middle ear. If there is a problem in the middle ear, this type of testing will show the true hearing ability of the inner ear.

They tested Nolan's middle and inner ear systems, and found the following:

The black line shows that when they bypass Nolan's middle ear system, he hears better than when they play sounds through headphones. This means that a portion of his hearing loss is due to a mechanical problem with his middle ear bones. The other part is due to inner ear hair cell damage.


This type of hearing loss is termed a "mixed hearing loss." In Nolan's case, nothing can be done to fix the conductive portion, since we don't have a cause for it. His mechanical problems are not caused by fluid, since he has functional tubes in his eardrums. It is likely that his mechanical sound transmission problems are caused by stiffened middle ear bones- the result of chronic infection. This is why ENT's are very aggressive in treating middle ear infections in children with pre-existing hearing loss. Even though our ENT has been right on top of Nolan's hearing loss and ear infections, damage has been incurred. Hopefully the new, spiffy "permanent" tubes will prevent further damage to his middle ear system.

In the meantime, Nolan has yet another cold with a fever- hopefully this will disappear in time for his pH probe on Monday. I am ready for summer to arrive and these nasty germs to disappear!

And We Have a Consensus

With Nolan in a cooperative mood, we set out for Buffalo Children's this morning. With the sun shining, a good night's rest, and some blatant bribery, he made it through an entire hearing test. The audiologists at WCHOB were very impressed with his skills in the booth- I don't think they see a lot of kids who have an auditory-verbal background, since listening and hearing test skills are integrated into the therapy we do with Nolan. While we are not a true AVT family (there is no actual AVT center around here), we incorporate as many of the "learning to listen" skills as we can into our therapy.

The result of the testing indicates that Nolan does NOT have a purely conductive loss. His hearing levels are currently a mixed, flat moderately-severe loss. This is fairly consistent with the most recent audiogram obtained at Buffalo Hearing and Speech Center.

Guesstimate Audiogram-
I don't really have a photographic memory.

This is good news, because it means that the sensorineural portion of his hearing loss is stable. This also means that the hearing loss detected at birth was sensorineural or mixed in nature, and not conductive. A bone anchored hearing aid is not appropriate or advisable in Nolan's case, so we can wipe that option off the table.

Unfortunately, he has lost hearing since birth. As it stands now, he cannot hear sounds softer than 60dB. All of the additional loss, however, is of a conductive nature. This means that there is a maximal point of progression, since conductive losses can only add so much to a sensorineural hearing loss.

There is a good chance that Nolan's low frequencies were a mixed hearing loss at birth (he had a 50dB loss in this region, even before he had any ear infections). The current theory is that his loss has progressed due to tympanosclerosis (thickening of the ear drum) and some stiffened middle ear bones from chronic ear infections.

We do need to get a "tune up" on his hearing aids, since they are programmed for a 30dB loss in the high frequencies and he currently has a 60dB loss in this region. The conductive portion of his hearing loss is not "fixable," since it is not due to fluid build-up or other reversible causes. Hopefully the new permanent tubes will prevent further infection and damage to his middle ear system!

Getting Ducks in a Row

Nolan's "third site" hearing test is scheduled at Buffalo Children's (WCHOB) on Wednesday. People often ask why Nolan is underamplified, and there are a few reasons for his amplification difficulties. One reason is that his hearing levels fluctuate- his high frequencies have been anywhere from mild to moderately severe (currently at moderately severe). When his hearing dips, the amplification is insufficient to get him above the speech banana in the high frequency ranges. This is the reason that he has completely lost his high frequency sounds, and can only hear them with an FM system (his aided thresholds are in the moderate range in the high frequencies).

The other reason is that part of his hearing loss may be an idiopathic conductive hearing loss. Conductive hearing losses often take more power than a sensorineural hearing loss, and the DSL programs for programming hearing aids are based on sensorineural hearing loss parameters. In other words, Nolan's hearing aids aren't programmed appropriately due to the recently discovered nature of his loss. Without aided audiograms (our current audiology clinic refuses to do them), we are not able to get his low frequencies set to the right levels.

As a recap, we have had several different results for Nolan's hearing levels. We obtained Nolan's first bone conduction scores back in May of this year (this should have been performed with his newborn ABR testing). At the age of two-and-a-half, this is what his audiogram looked like:

His air conduction scores were in the moderately-severe rising to mild category. His left ear was the better ear. His bone conduction score was a rising configuration, indicating that his cochlear (or sensorineural) loss was consistant with his newborn ABR testing.

Then we went to John Tracy, and the testing there resulted in this audiogram:

The testing obtained at John Tracy indicated a conductive loss for all frequencies below 2000Hz, and a sensorineural loss 2000Hz-4000Hz. In other words, his cochlear hearing loss is in a traditional sloping pattern. The conductive hearing loss in the low frequencies will require more power to obtain access to the speech banana. It is interesting to note that the left ear (which was mild in May) shows a moderately severe air conduction threshold, with no appreciable air-bone gap. In other words- his high frequencies have a fluctuating sensorineural hearing loss. We have seen his hearing levels go up and down in this frequency range over the past two years. His low frequencies are conductive, but relatively stable.

With such different test results, we returned to our current audiologist in Buffalo to repeat the bone conduction testing. We achieved these results:

I used the air conduction thresholds obtained in May, since we didn't get any air conduction testing run. The bone conduction testing in August demonstrated a conductive loss at 500Hz (consistent with John Tracy), and a mixed loss at the other frequencies.

With three different bone conduction results, we need to get a "referee" test to determine which is the most accurate. The audiology department at WCHOB will be running bone conduction, air conduction, and hopefully aided testing.

Hopefully, with a proper hearing loss diagnosis, we will be able to manage his amplification better and will have a clearer picture of how his hearing loss fits in with his other medical issues. Unless, of course, we get yet another "different" hearing loss picture- hopefully the WCHOB results will match the John Tracy results or the original Buffalo results. Then we can find someone to take Nolan's declining articulation scores seriously and get his amplification set to appropriate levels.

We really want to get his plurals back!

Parents As Teachers Program: Selected Activities

It started snowing today, then changed over to sleet. We are done with preschool and stuck inside the house, so I thought I would give a synopsis of some of the materials used in the PACERS/Parents As Teachers program through our local school district. All of the activities are meant to increase pre-literacy and fine motor skills, and all of the activities are really fun!

We went to the local elementary school where the PACERS children had a pretend picnic. Picnic baskets were made out of apple boxes and shoe boxes, and the children decorated the boxes with little stickers (tiny stickers are great for developing fine motor skills). The children had cheese-and-crackers for snack, using the little red stick to spread the cheese on the crackers. We were told to observe the children to see if they could turn their wrist, or if they used a simple back-and-forth motion while spreading. Apparently, cheese-and-crackers is a great snack for fine motor skills! The children also made trail mix, using a tiny scoop to pick ingredients out and place in their bowl. They made their own pudding, by pouring some milk into instant pudding, then shaking a sealed container until the pudding set. This is a simple activity for a rainy day- having a "snack picnic" develops a lot of skills!

Tiny books were included in Nolan's October activity bag. The story is very short- "An ant took my apple. I had it for a snack. An ant took my apple. I want my apple back!" Nolan colored the book (fine motor) and has learned to memorize the story and "read" it back to us.

Name-in-a-bag. This one is very simple, and is great for helping children learn to recognize and spell their own names. We wrote Nolan's name on the ziplock baggie, and then individual letters on construction paper. Nolan places the letters of his name under the written version. This activity reinforces left-to-right progression, name and letter recognition, and fine motor skills (placing the small letter cut-outs on the bag and lining them up).

Take-away apple. This is a fun game, made out of a laminated manila folder, an apple cut-out, and kidney beans. We roll the dice, and then remove the designated number of "apple seeds." Whoever runs out of seeds first, wins. Nolan loves this game, and so does Matt (we have more than one playing board). Skills learned: one-to-one correspondence, subtraction, fine motor skill improvement (those beans are little)!

Apple mosaic art. We tore apart colored construction paper and glued it onto an apple shape. The act of tearing paper increases hand strength and fine motor skills. Nolan's apple is on the left- he was very concerned about covering every part of the white apple. Matt's is on the right- he tore his apple pieces into shapes to resemble a "city inside of an apple." It is very interesting to see how two different children approach the art activity in different ways!

The November bag is FILLED with activities, from place mat turkeys to letter shape categorization. A book called "All About Me" is included in the pack- Nolan will answer questions and we'll write his answers down in the book. He can draw pictures and color the book- I have a feeling he'll like this activity a lot.

Another item from the November pack is a blank recipe book. We can write down simple recipes, or use pictures in a left-to-right manner to indicate the method for making simple snacks. We will probably make some simple recipes for fruit/yogurt parfaits and trail mix for the boys' recipe books.

Honestly, this pre-literacy program is wonderful. Nolan and Matthew really love the activities, and studies have shown that engaged parents using this curriculum have children who score higher on early literacy measures.

Now we're off to make some turkeys- I hope you have time to get crafty today, too!

GI vs. ENT: We Have a Winner!

I waited patiently throughout the day Tuesday, knowing that the turf war between the GI and ENT doctors was occurring. While I wasn't there to observe it, I assume the interaction looked something like this:

Before I could call the GI's office to find out which doctor was victorious in the epic Nolan Reflux Care battle, my phone rang. It was the ENT's office, proclaiming victory.

When we visit the ENT on November 15, we will discuss his laryngomalacia and the benefits/risks of the supraglottoplasty surgery. Then the ENT will place a pH probe in the office.

This will be quite a bit different from the last experience. Last time, Nolan was sedated for an endoscopy while they placed the pH probe, so he doesn't remember the traumatic experience. This time, he will be fully awake when they place the probe. It will be done in the doctor's office, and then we will take him home (as opposed to being in the hospital). This will be difficult, since three year old children are liable to pull the pH probe out- thus ruining the study. The ENT's office assured me they would set us up with arm restraints before we go home. Oh, goody.

On the plus side, Nolan won't have to undergo sedation (dangerous for children with central apnea). The ENT will be taking over most of his care, which will consolidate the number of doctors we see. There is the hope, however faint, that the ENT will come up with a comprehensive diagnosis for the little guy.

Unfortunately, November 15 is going to be a Very Sucky Day. Traumatic for Nolan, and stressful for us as we monitor him to keep him from pulling out the pH probe. I will drive back up to the ENT on November 16th to have the pH probe removed. We will receive the data a couple of weeks after that, and will know if his reflux is controlled enough to proceed with the supraglottoplasty.

Keep us in your thoughts- I'm not looking forward to this one!

Have Your People Call My People

We had a great Halloween this year- perhaps a little too good. We have been so busy with trick-or-treating events that my kitchen floor has been a wee bit neglected. Still, October was a great month and we are looking forward to a more sedate November.

Spiderman had to go to the GI doctor yesterday, because his Nexium prescription is running out. Our visits to the GI doc generally involve brief discussions of Nolan's progress, weighing him on a scale, and a lollipop.

When the ENT did Nolan's bronchoscopy, we discussed his Nexium routine. Our morning routine was absolutely fine, but I found out that Nolan had been receiving his nighttime medication incorrectly. We were never really instructed on how to give the evening dose, so we were giving it to him just before bed. As it turns out, he should receive it 30 minutes prior to his evening meal.

I am WAY too scatterbrained to remember to give the child his medication at 4:30pm, so we set up a little alarm clock to go off at the appropriate time. It has been working like a charm, and we're readjusting to the new medication regime.


We know that the Nexium is doing a LOT of good for Nolan. He's a little older than 36 months, but I used the birth-36 month growth chart to show how much he's gained since starting the medication. It has literally been a Godsend for him.


His height is starting to drop a little (going from the 50th% to the 25th%), but this is likely due to the fact that he was a low weight for so long. His body has a lot of "catch up" growth to do.

The appointment was going swimmingly until I mentioned that our ENT wants to do a pH probe on Nolan to rule out active reflux before embarking on the supraglottoplasty for the laryngomalacia.

The GI doctor was a wee bit ruffled by this and didn't understand why the ENT would do the pH/impedance probe. Apparently, I entered a turf war I didn't know existed. The GI doc stated that if the ENT is going to handle the reflux, then she would discharge Nolan from her care and hand him over to the ENT for follow-up. She wouldn't write a prescription refill for the Nexium, because if the ENT is going to handle the reflux care, then the ENT should write the prescription for the medication refill.

The net result of the appointment is that I drove for two hours with two small boys, chatted about Nolan's wonderful progress on Nexium, then walked out of the appointment with a dozen phone calls to make. And without a Nexium prescription. Luckily I have enough to cover the rest of this month, and we see the ENT on November 15. To be honest, I would prefer for his ENT to handle his care entirely, because she is aware of how difficult Nolan is to diagnose and has been a champion for him from Day One.

The GI doctor is going to call the ENT doctor today, and then I am supposed to call the ENT and the GI docs on Wednesday to figure out the solution to the epic "GI vs. ENT Turf War." Hopefully we'll know who is taking charge of his reflux care by Wednesday.