We haven't picked them up yet, but Nolan's new hearing aids are on order. We will drive up to Buffalo on January 14th to pick them up - we chose the Bolero Q70 SP model. These hearing aids have 16 channels (as opposed to the eight channels Nolan currently has) and are water-resistant. They also have an integrated FM receiver.
The integrated FM is a huge plus. Nolan's personal FM system has not been working properly since he started school in September. He has a Phonak Inspiro, and it has had multiple issues. First, the transmitter was sent to Phonak and they did some basic maintenance... but the transmitter would not work once it was sent back to the school. Phonak replaced the transmitter when it was sent in for the second time, as there was a faulty circuit board. Then it was sent in for a third time because it wouldn't work. Now, one hearing aid won't register the FM signal - but this time, we think it is the hearing aid and not the FM system. Hopefully getting Phonak aids (instead of the Unitron aids he currently has) will help solve our FM problems. While his teachers are so happy to state that he "compensates well," lip reading and filling-in-the-blanks is not the same as actual hearing. He misses a lot.
He is also getting new glasses, which will be picked up the day after getting his new hearing aids. I am excited for his soon-to-be improved vision and hearing!
In other news, the windchill has caused our school to cancel for two days in a row (-30 Fahrenheit with the windchill, -12F as the "regular" temperature). It is warming up tonight, and will actually rain on Saturday. The kids are getting a bit antsy, as the weather has been too cold to play outside and there is a lot of pent-up energy here!
Despite our concerns about Nolan's hearing levels, the boy is doing wonderfully in school. He is pulled out every day by his TOD (teacher of the deaf, also known as a D/HH teacher, depending on where you live). He also gets pulled out twice in a six day cycle for speech therapy. His TOD works a lot on his language and reading skills, so he gets an extra boost in this area.
The school district performs standardized testing (aren't our schools all about the standardized testing these days?) to determine which children might need help with certain skills. Nolan did wonderfully on the Aimes-Web assessment:
If you aren't familiar with the format of the test results, an explanation follows:
The dark line under the gray rectangle is the "benchmark." They expect all students to perform at or above this line. Children who perform under the benchmark (target) line are referred for extra help with reading.
The gray rectangles depict the average range for children in Kindergarten. "KF" denotes "Kindergarten - Fall" and "KW" denotes "Kindergarten - Winter." This shows the individual growth of a child from one quarter to the next.
The dot is Nolan. He's sitting on top of the long pole on a few of the measures. This means that he is outranking his normal hearing peers by a considerable distance. Yes, this is bragging. Shameless, shameless bragging.
They test letter naming fluency (LNF) - how many letters the child can name in a minute. Nolan scored 100%.
He did very well for letter sound fluency (LSF), too. He's in the average range for this skill. He had to provide the sound each letter makes within a certain time period.
He's also in the average range for the PSF (phoneme segmentation fluency). In this test, the child is given a word (orally), and the child has to break down the word into individual phonemes. If given the word "named," for example, the child would break it down into "n - a - m - d."
The last test is nonsense word fluency (NWF) and Nolan rocks at this skill. They give the child fake words, like "wib" and "kuf" to see if they can read the word using the rules of phonics. Nolan is awesome at sounding out words.
Nolan is starting to read anything and everything - I find him reading quietly upstairs after school. I love it.
The only areas of "developing" status have to do with his fine motor skills, which have always been on the radar. He doesn't really qualify for OT yet, but we're monitoring it and working with him at home. Hopefully his hand strength and coordination will improve with age (he's an August birthday, so a "younger" five year old in the Kindergarten class).
Writing sample, 5 years, 5 months. Not too shabby!
As far as his "special services," we have noticed some regression with certain speech sounds and sound discrimination. He may have lost more hearing, and if his FM isn't on, he can't hear (he is FM dependent, particularly at school).
His TOD has the following notes:
Nolan's ability to produce /ch/ and /j/ has decreased, and we have discussed that being, in part, a possible function of a decrease in hearing.
I have him walk ahead of me and give him random words and phrases to repeat and he can do this with his FM on in a very quiet setting.
He cannot perform this task if his FM is not on.
Nolan is struggling with determining whether two words rhyme (he used to have no difficulty with rhyming words).
Overall language skills are good considering level of hearing loss.
Grammar errors such as "I have saw it before," "He didn't want to get caughten," and "He runned away."
Overgeneralizes plurals - adds /s/ to everything: snowmens, foots, ghostus, etc.
Vocabulary holes for many basic words, including needle, broom, pot, and vase (examples).
Difficulty with directional activities including "behind" and "beside."
Difficulty with 2-step direction coloring task (would reach for each color as soon as she said the word so he wouldn't have to store the information in his auditory memory).
His speech language pathologist has the following notes:
Nolan sometimes has a slushy, lateral "z" or a whistling "s" when in therapy. These sounds are usually slushy when used spontaneously.
Discrimination of correct vs. error sounds varies from session to session and is tied to his hearing.
Some word specific errors such as, "renember," "meed" (for need).
Inconsistent /ch/ and /l/ sound.
Overall, Nolan is doing really well. Some of his errors are probably typical for any 5 year old child (using "runned" instead of "ran," for instance). Some are obviously tied to his hearing, particularly sounds that he used to have and has now lost (he had a crystal clear /s/ sound at the age of 2, and it is now very slushy, for example).
I am anxious to get his hearing test done on the 13th, as that may provide some insight into some of his recent difficulties. He is academically on target and his reading skills are fantastic for a child of his age, so I can't complain!
We went to visit Nolan's classroom this evening. His classroom is very colorful, with lots of centers. It is a great contrast to Matt's Kindergarten classroom, which was very sterile in many respects (and had few centers).
Nolan's teacher plays the piano and has one in her classroom. I really love the inclusion of music and center time into the kindergarten day. I didn't get a lot of pictures of his classroom, because I was talking to his Teacher of the Deaf. She had his new FM system set up and waiting.
I will have to return the county-provided FM system, which is sort of a bummer. On the other hand, the school district is allowing me to take his FM system home, so I consider this a big WIN.
We can still use it at home, and I will set it up each morning and take him to school with it on, just as I did last year. This worked well for us last year, so we'll keep doing it again this year.
I did tell his TOD that his reporting skills were hit-or-miss. If both hearing aid batteries die, he will always say something. Since he is functionally deaf without hearing aids, two dead batteries really impact him. If one battery dies, however, he won't say anything. As long as he can hear something, he figures he's still good to go. If the FM isn't working, he'll often insist that it is - until you fix it and turn it on, when he'll declare, "I can hear you now!"
Fortunately, he has hearing aids so his occasional failure to report malfunctioning equipment can be checked - we can listen through his hearing aid/FM combination to be sure it is set correctly.
School starts on September 5 - we're all excited for a great year!
We've had a rather busy week - Nolan's gut seems to be doing well, though his missing "s" sounds haven't returned. No sign of an ear infection is present, so I suspect we'll see another drop in those high frequencies when his hearing is tested again.
On Wednesday, Nolan came home and I had a few errands to run. No big deal, but I didn't check his backpack until 4:00pm, when I discovered that his FM transmitter and its case were missing. After some questioning, I discovered Nolan had had a substitute teacher for the day.
I figured it had been left in the classroom - the only problem would be the following day, when the battery in the unit would be discharged. I was also a wee bit concerned that Nolan had taken the unit out of his backpack and tossed it somewhere... you never know what to expect with a four year old!
Fortunately, his teacher was back to school on Thursday and we quickly located the FM transmitter and case. The Phonak Inspiro only takes about 10 minutes to fully charge, and I had the unit set up and running by the start of class. I have a feeling we'll be playing "hide and seek" with the FM system every time there is a substitute, so I'll be sure to check his backpack immediately after school each day. It wouldn't have helped much in this case, though, because the unit was actually located on top of an 8-foot high cabinet.. I would never have found it while searching after school!
Nolan has been quite full of stories lately, too. He told me that it was "G" week and the teacher surprised them by bringing in Golden Retrievers. According to Nolan, there were three puppies and a mommy dog in a large crate, and the children got to take turns holding and petting the puppies.
I told his teacher how awesome she was for bringing in puppies for the letter of the week, and she simply said, "Puppies?"
Hmm... as it turns out, there were no puppies, but we do have a four year old boy with quite the imagination! Perhaps he's just trying to plant some ideas for when "G" week rolls around!
Nolan's most recent bout of reflux seems to have disappeared. Over the weekend, we had two great C-Pap nights, and Nolan managed to keep his mask on until 6:00am (Saturday) and 8:15am (Sunday). Last night he didn't make it past midnight, but that's how it rolls with C-Pap therapy and tiny children. We take the good nights when we can get them!
Sadly, we didn't make it to Zoo Boo, because it was raining, 45 degrees, and the wind was gusting at 50mph. We'll try again this weekend: the temperatures are supposed to be lower, but it won't be raining.
The weather did cooperate for Nolan's field trip today. His "X-Cel" (private preschool) class took a trip to the Jamestown Audubon Society. The kids found maple, oak, and apple leaves. They also found chestnuts and made rubbings of tree bark and leaves. It was a wonderful afternoon (and I was thankful for the 100th time for his trusty FM system)!
Nolan is quite the nature boy these days. This is mildly surprising, since he used to have a very strong fear of plants. He has been spending quite a bit of time on the edge of the woods, searching for newts and frogs - though he's a bit nervous about venturing deeper into the forest. That suits me just fine - a little healthy caution is never a bad thing!
He came home from school this morning with one "dead" hearing aid - his battery died at preschool. I asked him why he didn't tell his teacher (she has extra batteries), and he simply said, "I don't care if I can't hear with one ear." Sigh....
I'm going to start replacing his batteries every five days to prevent the batteries from dying on him during class. They used to last about 8 days (without the FM system running). With the FM system in school, the batteries last about six days. I figure if I change them every five days, then we should be able to avoid any problems during the school day.
I also found out that Nolan is changing his hearing aid program. He came home from preschool the other day and it was set to the regular hearing aid program (not FM). I told him to leave his program buttons alone, and he said, "I don't want to listen to my teacher all the time."
I think I have found his super power - he really does have the power of selective hearing! Stinker.
We went to the sleep center today, and he had his actual appointment. His lungs sound a little junky, but nothing too serious. The back of his throat looks good, and his weight is fine. I was relieved when the sleep center doc told us that 4-6 hours per night was absolutely fine for C-Pap use. Nolan may never get in a full night's sleep with the C-Pap, but most growth hormone is secreted during the first 4 hours of sleep. If he gets "quality" sleep during those first four hours, then that is "good enough." He is still very fatigued and has a hoarse voice- that is what we will live with since he has such severe reflux.
I did ask about getting a full-face mask, and he recommended against using one. Apparently, a lot of little kids are "aerophagic" (seriously, I learn a new word every day with this kid). If a full-face mask is used, Nolan could swallow air all night long and end up vomiting into the mask. Or he could just end up belching a lot with a distended stomach. On the other hand, he can't really use the nasal mask when he is congested. And with the airway reflux, he is congested all. the. time.
The respiratory therapist called me and said she does have a sample of the full-face mask in stock. We could try it - if he is "aerophagic," then we'll know right away. If not, then it may be a good solution for him. I'm happy they have one in stock - it lets us try before we buy. I'll pick it up tomorrow when both boys are at school.
Next week is entirely doctor free, so we are going to enjoy the down-time!
We missed Nolan's first soccer practice because we returned late from his ophthalmologist appointment. He was rather upset about this, but cheered up considerably on Saturday: he would get to play soccer at last!
We was even more ecstatic when he received a jersey. The Under-4 league has jerseys already, and the Under-6 league does not - this meant that he constantly told Matt: "look at my shirt, Matt. I have a soccer shirt! You don't have a soccer shirt!" This began to wear on Matthew after a while (he should get his uniform by the end of this month).
I brought the FM system to the field with Nolan. I hadn't indicated any "special needs" on his soccer enrollment form - so it was probably a bit of a surprise to his coach. To be honest, I had simply forgotten to write it down. We're so used to his hearing aids, that we don't think about it much. I stuck the mic on her shirt with a brief "don't worry, he does just fine" and walked away.
And Nolan did great. He ran with the ball, he listened to the instructions, and he played the games. He was slower than a lot of the other kids (he's never going to catch the other preschoolers in duck-duck-goose), but that is mostly because he is smaller than most of the other kids. Those short little legs have to work harder to keep up!
Nolan: the little guy on the left.
He is extremely excited to play the rest of the season. He wouldn't take his shirt off when we got home, and was very proud of being "Number Seven." Soccer makes him happy, and that makes me happy.
I want was driving to Dennis's softball game, when Nolan suddenly shouted from the backseat:
"I want my SISTER!"
Considering that Nolan doesn't have a sister, this was a rather unusual request.
After some considerable questioning, we determined that his "sister" was not a girl, was not a friend, and was not a human child.
He finally clarified,
"I want my sister so I can hear!"
Oh. He wanted his system. His FM system. Wow - that's a first!
The new settings on his FM system are fabulous. I do have to listen to the aids to verify they're set to the right program, but once it is set, he loves it. I didn't realize how often I was tapping him on the shoulder to get him to face me, or shouting over the front seat of the car to the back seat. He used to repeat the same questions endlessly in the car, because he couldn't hear the answer until we screamed it to him. With the FM system, that issue has disappeared.
He wore it to the zoo, he wore it to his last day of preschool, and he wore it to the amusement park yesterday morning. It is simply brilliant. He can hear everyone else, but he can hear me at a slightly higher volume than everyone else. He can also hear me over distance, which is amazing. Normally he can't hear when he gets about 10 feet away in an outdoor environment, even with aids on. With the FM system, distance is not an issue. It was awesome to call to him as he was running the wrong direction in the crowded amusement park, and have him hear me calling to him to stop running.
We plan on using it at his first soccer practice this morning. Hopefully the rain will hold off long enough to let the kids play soccer!
The drive to Buffalo is long, but fortunately we have invested in hand-held gaming systems reared travel-hardy children. Nolan was a little recalcitrant about going into the audiology booth, swinging his legs and beginning to throw a fit. I used blatant bribery (a trip to the zoo) to get him to cooperate. I'm not above zombifying my kids with electronic entertainment or offering bribes anymore. I think I have "arrived" as a mother.
He cooperated nicely. I think the last full hearing test done at his regular audiologist was over a year ago. Their last record still shows a rising configuration in his left ear, which made his loss moderately severe rising to mild. Our testing at Buffalo Children's last November showed a flat moderately-severe loss, so I wasn't surprised when our current audiologist showed the same thing. I did see one point hit the 70dB mark, which makes me a little anxious. That's a little close to the "S" word (severe) for my liking. Thankfully that was only one frequency.
Before increasing the amplification in his hearing aids, they want to confirm with another hearing test in a month.
Oh, goody.
The strange thing is that his air-bone gap has largely disappeared. This means that his loss is purely sensorineural again - either he's been throwing false air-bone gaps (it happens), or he has a truly fluctuating/progressive hearing loss that proceeds in a very weird fashion (the drops appear conductive at first, but solidify into a sensorineural loss). Weird.
I suppose time will tell. Hopefully he'll stabilize where he's at.
Tomorrow we are going to Erie (a slightly shorter drive, but still an hour each way) to see the ophthalmologist. To patch or not to patch, that is the question!
Monday: Matt's preschool, Nolan's speech therapy, and Matt's second preschool.
Tuesday: Drive to Buffalo for a hearing test, and to adjust Nolan's FM system. Matt's first soccer practice.
Wednesday: Matt's preschool, then drive to Erie for an ophthalmologist appointment (we get to find out if Nolan gets to rock the fashion world by sporting a patch and going pirate-style). Then Nolan has a soccer practice, and Matt has swimming lessons.
Thursday: Nolan's last day of preschool, and his "birthday" during class. I have a mothers of preschoolers steering meeting, and Matt has preschool.
Friday: Matt has an end-of-year picnic for pre-K at a local amusement park, so we will be spending the day having a ridiculous amount of fun in the sun!
I love the summer months, but June does get a little insane with the end-of-school parties/events, and then we have a bazillion doctor appointments for Nolan. He sees urology on the 16th (this is routine, and we are hopeful he will be discharged from this specialist). The sleep neurologist is scheduled for the 21st, and the upper GI is scheduled for the 27th. At least one trip a week to Buffalo Children's is on tap for the remainder of June: if only the drive were shorter!
The good news is that preschool ends on the 24th of June (for Matt), so July should ease up a bit with the schedule. I plan on spending a lot of time at the local parks, municipal swimming pools, and on "field trips" to the beach!
Nolan's IEP meeting is on the 25th. This should go pretty smoothly, since his language is generally age-appropriate and we're going to maintain his services. Once we get his new goals into place, we should be set for another year.
I finally managed to get an appointment to adjust the settings on Nolan's FM system: it is currently set to 100% FM, which is not great for the classroom setting (he can't hear his peers with it on). Since his ENT wants a hearing test, he'll have an audiological evaluation and FM System adjustment on June 7.
Matt obtained his prescription for DDAVP (Desmopressin). We had the option to try this drug prior to starting on invasive testing through a urologist. If the DDAVP works, then we know that the little guy's bladder just needs to mature. If it doesn't, then we will have to see a urologist. We will start with 1 pill/day for week one, and if there is no improvement we will go to 2 pills/day for week 2. The last step is 3 pills/day during week three - if it doesn't work at that dosage, then we have to go to the urologist for more testing.
The Nurse Practitioner has seen the sleep study results for Nolan, but won't review them with me. She said she would really prefer Dr. Brodsky to review the results with us, so I won't see the sleep study report until Monday. I hate having to wait until the main appointment to see the written report, because it is easier to formulate questions after I've had time to digest the information in the report. If he passed it, then I wish our pediatrician's office would just tell me - the extra stress of waiting isn't really appreciated. If he failed it, then several more procedures will likely be recommended - and it would be nice to not get blind-sided by the information (and have to make decisions) at the appointment on Monday.
I made a vision appointment for Matt - I don't suspect any issues, but he starts kindergarten next year, and I thought it would be a good idea. Also, siblings have a higher rate of developing amblyopia than the general population, so it is probably a good idea to make sure both eyes are in good working order.
The weather has been truly awful: this entire spring, we have seen exactly 7 days of sunshine. We are supposed to see the sun and hit *gasp* SEVENTY degrees on Saturday. Otherwise, it has been rain every. single. day. With temperatures in the 40's. I will be glad when the weather warms up and we can get outside to play again!
If you are sitting right next to Nolan in a quiet environment and say the "S" sound in isolation, he can detect and reproduce it. The "S" sound within a word, however, is completely masked by the louder vowel sounds- and he can't hear the "S" sound if you are more than 3 feet away.
Why is "S" so important?
It denotes plurality: duck vs. ducks
It shows ownership: Bobby's toy
It stands in for a full word in contractions: She's going to the store.
To check how well Nolan is hearing across the speech frequency spectrum, we do daily "Ling Checks." If he can detect and discriminate these sounds, then we know he is hearing across the full speech spectrum for the English language. Here is an example of Nolan responding to the Ling sounds with his hearing aids on, from a distance of three feet.
He can't hear the "S" sound, even with his aids on. This is the problem of under-amplification. We are in the process of getting a "third site" hearing evaluation performed for Nolan, but I doubt they'll get an aided audiogram done at Buffalo Children's (I'm certainly asking for one).
One way to address the situation is the use of the FM System, which adds about 15dB to the sounds Nolan is receiving. It helps solve our "disappearing S" problem. Here is the same Ling test, using the FM System:
Using the FM System, Nolan can hear the "S" sound. This is not a perfect solution to his problem of under-amplification, but it will help him learn to detect and discriminate the sound within words. Once I can get the FM System set to the recommended 50/50 mix, he will be able to wear the FM system on a more regular basis and will (hopefully) begin spontaneously adding the "s" sound into his speech.
Tuesday afternoon, the boys and I took a trip to Buffalo to get Nolan's hearing aids programmed to accept the input from his new FM System. It was a trying afternoon (lots of fighting in the audiologist's office and one child bit the other), but well worth it. The new FM System is working brilliantly, though it is taking Nolan some time to get used to the set-up.
FM Systems have three modes:
Off: Nolan hears through his hearing aid microphones only- the FM System is not activated.
FM only: Nolan hears through the FM System only, and does not hear any noise through his hearing aid microphones. This means he can hear the speaker's voice very clearly, even over a large distance or in the presence of loud background noise.
FM + Hearing Aid Microphone: Nolan does NOT have this feature activated yet, but we will ask his audiologist if it is possible to do a 50% mix of FM and Hearing Aid Microphone when we see her again. Sometimes, hearing aid and FM system incompatibility cause issues with doing a "mix." Hopefully Nolan's Unitron hearing aids can handle this type of program.
Nolan's first reaction to the FM System was to hate it. "It's OFF! I can't hear! Turn my hearing aids on!" This was rather disappointing. I had hoped he would love it straight away. He found the location of his program buttons and learned how to shut my voice off in 0.05 milliseconds. He far preferred hearing all of the sounds around him as opposed to hearing only my voice.
There is a learning curve for the FM System- for Nolan and for me. Since he has the "FM ONLY" option, we are learning the appropriate places to use the system. Using it during group activity times is not really appropriate, because he can't hear his peers. Using it for Circle Time, speech therapy, and for distance hearing is appropriate.
We stopped at McDonald's on the way home from the audiologist, and I turned the FM System on before releasing Nolan into that Habitrail for children known as Playland. The FM System was awesome: I called his name when it was time to leave, and he came right out. The other mothers stared with envy- I'm pretty sure they all wanted a direct radio-link with their children at that moment.
Of course, Nolan came out of the Playland, looked at me, and said, "I turn you OFF!" Then he turned and ran back into the play structure. Barring his ability to turn me off, the FM System is awesome.
We're using it for about an hour per day now, and Nolan is adjusting beautifully to wearing it when we are doing structured activities. His distance hearing is pretty shoddy, since he is underamplified. Three year olds tend to run like crazy and have no concept of danger. Since not getting squished by a car is pretty important, his ability to hear outside of a 15 foot distance is vital. Here's an example of Nolan's distance hearing without an FM System:
As you can see, he doesn't hear at all in this environment as distance increases. This is why my blood pressure is generally through the roof as he approaches our street on his tricycle, and can't hear me yelling at him to stop. There is a lot of panicked running with a hard-of-hearing preschooler who can't hear cars coming.
In contrast, here is his distance hearing with the FM system:
His ability to hear over distance with the FM System is nothing short of amazing. He can hear us calling for him to stop or to be careful. We plan on using it at the upcoming Zoo Boo trick-or-treating event, so he can hear us in the extremely noisy and crowded environment.
While in the midst of a very bad cold (I'm convinced the virus was related to The Plague), the County Department of Health gave me a call to schedule a drop-off time for Nolan's FM System.
It was Friday- and a confluence of events meant that I had two rounds of preschool, and OT evaluation, a meeting with the TOD (teacher of the deaf), and a pediatrician appointment for Matthew. With the virus and the accident from the night before, I decided to cancel preschool and the TOD meeting. And then my Superhero Husband arrived home early from work, to take Matthew to the pediatrician while I feigned consciousness for the visit from the County of Health.
The woman arrived, dropped off the system and the paperwork, and I spent some time figuring out how to remove Nolan's battery doors and replace them with the nifty little "boots" sent by Unitron. The Inspiro receivers plug into the boots, and I was pleasantly surprised to find the set-up wasn't too big on his little ears.
Hearing aid, with "boot" and Phonak receiver
The Inspiro has a monitoring function, and the receivers and transmitter are communicating to each other. Unfortunately, Nolan's hearing aids aren't communicating with the receivers, so the FM isn't working quite yet. I think his hearing aids need to be reprogrammed to allow access by the FM system (most of his hearing aid functions, including telecoil, are currently turned off, due to his age). I have a call in to his audiologist to see if we can get everything up and running soon.
I really can't wait to use the FM System in the classroom and in other noisy environments. For the first time, he'll be able to hear clearly in busy locations.
The entire FM set-up: Transmitter and Microphone
Thanks to Phonak and our local school district, the sound of Nolan's future is ON. We couldn't be more thrilled!
I'm not really a "phone person." This is unfortunate, because Nolan has required a lot of phone calls this week. Today, I have called:
The ENT's office, to verify Nolan's surgery on October 12 will be covered by insurance.
The anesthesiologist, to verify the anesthesiology services will be covered.
The new Teacher of the Deaf, to set up our first meeting (this Friday).
The County Department of Health, which is currently in possession of Nolan's FM System.
The billing department at our audiology clinic, because we were incorrectly billed for Nolan's earmolds while he was still in the early intervention system.
The audiologist, to update her as to Nolan's fluid/ear infection status and pending surgery date.
This is not very many phone calls, I know, but I truly dislike sitting on hold while listening to a tinny rendition of "Staying Alive." Especially when I am spaced out on Dayquil.
I do feel like I managed to get some things accomplished: I saved $120 for the earmolds, and verified that our insurance will cover the surgery AND anesthesia on October 12.
Some things are still up in the air, but should get sorted out soon. The County has the FM system up in its office in Mayville. No one knows how to set it up, but as the nice woman on the phone said, "You probably know more about these things than we do."
It looks like I will be reading up on the Phonak Inspiro via The Almighty Google. I have a feeling this will require yet another phone call to our audiologist to get things in order.
Everything is slowly falling into place according to Nolan's IEP, and we should be fully compliant with the accommodations and assistive technology by October!
Nolan's favorite song recently has been "Celebration" by Kool and The Gang. Whenever he hears the song on the radio ("celebrate good times-come on!") he'll shout the "COME ON!" part at the top of his lungs. We should turn on the song now, because we have something to celebrate.
I received an email from the school district that Nolan's FM system has been ordered from Phonak. Within minutes, I received a second email stating that the FM system is here. We were pretty sure the FM system wouldn't be ordered in time for preschool, and they managed to get it ordered and in-house within a couple of weeks. I am so glad we live in our particular school district- for all the worry about getting the services and accommodations Nolan needs, they have made everything happen in a very timely manner.
I never thought I'd be so happy over a piece of equipment. Without that little machine, Nolan would only hear a lot of mumbling during circle time. With that little machine, he will hear his teacher read the story, ask questions, and give directions. He'll be able to hear his teacher, even when she's outside of his 5' hearing bubble.
He'll be able to hear the music the other kids are dancing to.
Here's to a whole new world of sound- in the classroom!
Background noise is a real difficulty for children with hearing loss. The average background noise level in a classroom is somewhere in the neighborhood of 50-60dB. Considering Nolan's average hearing ability is at this level, picking the teacher's voice out amongst the din can be a difficult chore. Essentially, the signal-to-noise ratio is not high enough for Nolan to hear the teacher above the background noise.
For children with normal hearing, background noise is a problem. Many schools have placed sound field systems in classrooms to help raise the teacher's voice above the general noise level. For children with pre-existing hearing losses, a personal FM system is more appropriate. The FM system works with Nolan's hearing aids to give a much better signal-to-noise ratio. The teacher wears a wireless mic, which sends her voice directly into Nolan's hearing aids- it is as if she were only inches from his ears, rather than across the room.
Originally, we had planned on waiting until universal pre-kindergarten to request the FM system. Watching Nolan in his preschool classroom, however, shows that he is not hearing well in a group setting. He is disinterested in the stories during circle time, and wanders randomly. When a visiting youth pastor came to read a story, his loud, booming voice kept Nolan's attention. For the first time since starting preschool, Nolan was on the edge of his seat, listening to the story. For the first time, he could hear the story.
We decided to lobby for the FM system for next year. It won't be easy- it can be hard to convince school personnel with budget constraints that this equipment is necessary for Nolan to have equal access to the curriculum.
Our speech therapist wrote about background noise issues in her recent report on Nolan's language scores. I spoke to our audiologist, and she sent us a letter in support of the Phonak Inspiro FM System (which works with Nolan's brand of hearing aids).
We have our first CPSE meeting in two months, and we are hopeful the documentation trail will support our request for the FM system!
