Rein Moose

We have been introducing Christmas carols of late, and Nolan loves Rudolph the Red Nosed Reindeer- with one exception. He insists it must be Rudolph the Red Nosed Rein Moose. I have no idea where this came from, but he is quite insistent! For your viewing pleasure (I cannot carry a tune in a bucket- listen at your own risk), here is Nolan correcting my Reindeer song:



Of course, I realize this presents a great listening game. I try to sneak in "Reindeer" to see if he'll notice- he catches it every time!

Five Kernels of Thanks

My boys are thankful for the cat. The cat doesn't seem to return the sentiment.

With my pumpkin pie baking in the oven and the sound of two little boys running amok, I'm thankful to have a moment to reflect on all of the wonderful things we have in our lives. The Pilgrims had several dismal years with no knowledge of how to survive in this land, and at one point were rationed to five kernels of corn per day. There is a tradition of placing five kernels of corn beside everyone's plate at the dinner table on Thanksgiving, and talking about the five things they are most thankful for.

Here are my five:

1. Living in a nation where my children have good health care, access to plenty of nutrition, and a warm house to live in. My depth of gratitude for this is probably heightened because I just finished reading Cormac McCarthy's "The Road." Don't read this book unless you want to come away thoroughly depressed. Really, Cormac, what happened in your childhood? On the other hand, after reading such a horrific tale (cannibalism is just the beginning), you will be thankful for the very air you breathe.

2. Giggles. My boys giggle. A lot. I'm thankful that they're happy.

3. Tantrums. Yes, tantrums. They have their own opinions, and they're healthy enough to throw a fit. I'm exceedingly thankful for that.

4. Friends. Close friends, acquaintances, and online friends. Friends to grab a cup of coffee with, friends to vent with. Friends to laugh and play with. Friends to share similar experiences with. Friends are good.

5. Dibbadob Wibwobba. Nolan's newest phrase. It took me two hours to figure out what in the world the boy was saying. "Gobble Gobble, Wibble Wobble." It's a repeated phrase from his new favorite book: Ten Fat Turkeys. I'm thankful that he can hear and say this phrase. That he has a favorite book. I'm thankful that he was born in a time where services and technology allow him to have the same opportunities and abilities afforded kids in the mainstream. I'm thankful that these same services and technology will allow him to be in the mainstream.

Audiological Russian Roulette

Nolan had another hearing test yesterday. It went in a similar manner to his other hearing tests (to recap: we've never had two audiograms in a row that look the same). Every time we step into the sound booth, it's like playing audiological Russian Roulette. Which frequency will change this time, by how much, and will it be a loss or a gain? In the past, we've actually had an increase in hearing ability for the left ear after it had dropped. For a sensorineural loss, this is pretty rare. But obviously, it can happen. Nolan is proof of that.

Anyhow, Nolan's audiologist wanted to try and train him to do "play audiometry" rather than the "visual reinforcement audiometry (VRA)." In the VRA scenario, tones are played and the little guys are rewarded with a dancing puppet when a tone sounds. They quickly associate the beep and the dancing koala (or puppy, or rabbit, or whatever other stuffed animal can be shoved into a lighted box and animated). In play audiometry, the child is trained to drop a block into a bucket when they hear a sound.

The thing is, Nolan's on the young end for this task. He gets bored quickly and wants nothing to do with it. We did manage to get his 500Hz mark using this method, but most of the time he was just dropping the little bears on the floor and wouldn't cooperate. So we moved onto the VRA method to get some accurate readings.

Nolan's pure tone audiogram has taken yet another little dip. Of course, it isn't a HUGE dip, but typical Nolan-style, he's losing a tad at each hearing test. We only had fair reliability. His audiologist isn't very sure of his reading at 2000Hz in the right ear, because he wasn't really responding very well. she thinks he might have a worse threshold than what she plotted, and in her graph she placed a question mark beside it. The left ear's dropped a tad, too, but only in the low frequencies. We couldn't get the 4000Hz point, because Nolan was fed up by the time we finished with the 2000Hz point. I plotted out some of his hearing levels so you can see the progression. Not a lot at any one test, but a lot over time:


Anyhow, she did speech detection thresholds as well. This is where the biggest change was observed. Nolan was really playing along with this one, so we know they're pretty accurate. She placed several flashcards out in front of him, and had him point to the snowman, airplane, hot dog, popcorn, or toothbrush.

At our last hearing test, Nolan's speech detection was at 40dB in the right ear. Yesterday, he couldn't detect speech until it was at 65dB. That's a 25dB drop in his ability to pick up speech in that ear.

The left ear had a similar drop. In June, his detection was at 35dB. Yesterday, it was at 45dB- only a 10dB drop, but a significant decrease nonetheless.

We did a tympanogram, and his left ear is fine: the PE tube is patent and there is no fluid or wax. The right ear had a lot of wax and a flat tympanogram. We're hoping the wax and possible fluid (she couldn't see the eardrum) are behind some of yesterday's change. To that end, we now get to see the ENT in December. The possibilities after the ENT appointment are:

1. The extra loss in the right ear is caused by wax. This is easily remedied- the most hoped for scenario.

2. The extra loss in the right ear is caused by fluid. Not my favorite scenario, because this will require a third set of PE tubes. Which might come with an adenoidectomy. We'll take it as it comes.

3. The extra loss in the right ear is permanent. Which means we need to adjust his hearing aids, and review his CT scan and MRI again to make sure we didn't miss something like enlarged vestibular aqueducts. Again, we'll take it as it comes.

There is a lot of good news in all of this, though. For one thing, Nolan's hearing aids are still helpful to him. Also, his speech and language is developing despite any fluctuations he is experiencing. And these recent results might explain why he's shouting all the time and not responding as well as he used to.

Of course, I was really hoping for a long period of time without doctor appointments, but it looks like we're going to have a replay of last year's "Medical December." I managed to secure an ENT appointment on the 7th, we have a GI doctor appointment on the 8th. And we'll have a repeat hearing test shortly thereafter. Also, if there is fluid at the ENT appointment, we'll have another surgery to place a PE tube in the right ear again. We're going to be a little busy this Advent season.

They should really give us frequent flier mileage for all of our trips to Buffalo!

A Medical Home?

Way back in August, I was looking at our calendar and noticed an appointment missing. Nolan's two year old well-child visit had never been set up by our pediatrician's office, and I didn't realize this until I flipped the calendar over and realized there was no appointment scheduled for the little guy's two-year old well child visit.

I called the pediatrician's office, and they told me that if I wanted to see our regular pediatrician, we would have to wait until November for an appointment. Because Nolan has so many issues, I really wanted to see our regular pediatrician- it was worth the wait. We last saw the pediatrician for a well-child in March, which means that Nolan's posterior urethral valves, gastric motility issues, and severe gastro-esophageal reflux disease (GERD) were all additions to his medical file since that visit.

I walked into the pediatrician's office today, and in walks... a random nurse practitioner. Not our regular pediatrician, as I had requested. This meant I had to go through Nolan's general history with her, including his hearing loss, urology work-ups, failure-to-thrive, and GERD. She didn't have a "feel" for his history, so she spent a lot of time worrying about his language development (this isn't our primary concern at the moment, which our regular pediatrician would have known).

All of this underscores the importance of a child's "medical home." For children who have multiple medical specialists, the medical home is a central location for all of the various medical records, and a physician who is aware of the entire scope of medical and developmental issues at play. In our case, we have an audiologist, an ENT, a GI specialist, and a urologist who all submit records to our medical home (the pediatrician's office).

When you don't have the same physician on a routine basis, however, the medical home becomes useless. Perhaps for children who have no underlying issues, a random "doctor of the day" is fine. For us, it is a rather big waste of time, since all of the appointment time is spent doing "catch up" work rather than discussing current concerns and growth. Frankly, I feel like we are medically homeless.

At any rate, the nurse practitioner listened to Nolan's heart, weighed him, measured him, and ordered a Hepatitis A shot and a flu shot. The H1N1 vaccination is still not available in our area, so we were out of luck in that department.

The current stats are (at almost 27 months of age):

Weight: 23 pounds, 12 ounces. A slight decrease from his weight at the GI doctor's office in August (he was 24 pounds then). This is right at the 3rd%.

Height: 34 1/2 inches. This is just above the 25th%. His growth rate in height has actually decreased (he used to be in the 50th%), but he's on the charts in a healthy region, so there is no real concern. We'll keep an eye on it, but it shouldn't become a problem.

Head Circumference: 50cm. This is in the 75th%. No matter what, the boy has a lot of brains!

The nurse practitioner wanted to see him in six months, because they typically do a check-up at 2 1/2 years. I collected my howling children (Nolan, indignant because of the shots, and Matthew, indignant that he didn't get his choice of sticker) and headed for the front office.

There, I was informed that our insurance wouldn't cover a check-up in six months. So we'll see them again in a year. I wanted an August appointment, so that we'd be closer to Nolan's actual birthday. I was then informed that insurance mandates that the well-child visits be one year and one day apart. So even though we were almost three months late in getting to see the pediatrician, we can't set the appointment closer to his actual birthday. This is going to cause a problem for school immunization requirements when the time rolls around- he won't be allowed to have his immunizations until after school starts, all because of insurance company bureaucracy.

I'm not too worried, because we'll just use his specialists as his "medical home" if need be. Because in some strange philosophy of being "penny wise and pound foolish," the insurance company allows us to see the specialists whenever we want. Go figure.

Clubs and Nolan's Road Rage

We have had a very active month with playdates and club meetings. We were very fortunate to get invited to Ben's playgroup, and it was wonderful to meet everyone and let the kids play. My kids were quite cranky from a lack of naps that day- I promise, they're not like that all the time! We are definitely going to try the playgroup again, on a day where both boys have had naps and are in chipper moods!

We had a Jr. Deaf Club meeting tonight at the Optimist Camp in Gerry. It was wonderful to let the kids romp around in the leaves and watch the bonfire, while the adults talked and scarfed down food. It is nice for Nolan to see other kids in hearing aids and cochlear implants, even though he's quite a bit younger than most of the other Jr. Deaf Club members.

One of the things we have noticed while traveling around this month is that Nolan is becoming an absolute beast in the car. He whines, cries, and screams for the duration of the car ride. He's becoming louder in general, having a tendency to yell rather than talk. The car rides are the worst, though, and there is no way to deal with the behavior when I'm behind the wheel.

Tonight, for example, Nolan immediately started screaming, "SURKEY! SURKEY!" when we entered the car. For those not proficient in Nolanese, this translates to "thirsty." He's not actually very thirsty, considering the fact that he just downed two sippy cups full of diluted juice. The cries of "Surkey!" soon change to cries for his shoe, or for a book, or that his ear is bothering him. All of this is at a volume of approximately 100dB. Even Matt starts covering his ears, and the ride is absolutely miserable for everyone involved.

I am at a loss for how to contain this toddler road rage. Taking out Nolan's hearing aids works some of the time, but other times it just makes him increase his overall volume. If anyone has any ideas, they'd be very welcome!

Sigh...

Battery doors and two year old boys don't mix. Thank goodness for the electrical tape, which should keep the aid functional until we see the audiologist in a week and a half!

The Annual Stress-Out

Testing stresses me out, but the kids could care less

Every year, children in the early intervention system are required to have a full evaluation of developmental skills. This is important, because it helps with setting new goals and in monitoring developmental growth over time. Unfortunately, it also totally stresses me out.

If the little guy scores poorly, then I am afraid that we aren't helping him enough and for the implications of a language delay on his future. If he scores too well, then I am afraid he will get kicked out of the system entirely. For a kid with congenital hearing loss, getting "kicked out" of the system could be devastating, because without ongoing therapy the child will lose ground and begin to slip behind their hearing peers.

Nolan recently had testing, with the Preschool Language Scale-4 (PLS-4) and the Arizona Articulation Proficiency Scale-3 (AAPS-3). When the testing was completed, our speech therapist told me that his receptive language score was 117. I took this to be the percentile, and my panic button was immediately triggered. For those who missed the third grade, the 50th% is average. This would have meant that Nolan's receptive language was amazingly high.

Yes, I was thrilled that my little word-hound was doing so brilliantly well (his expressive score was 108), but we are coming up on his CPSE (Committee for Preschool Special Education) meeting for entering the school district. Early intervention allows a child with hearing loss to remain in the system without a delay, because the hearing loss has a high probability of causing a delay if untreated. The school district system doesn't work in the same way: the child must have a demonstrated academic delay in addition to their disability to qualify for services. Otherwise they are shunted to a "504" plan- for a preschooler who does not yet attend the neighborhood school, this means that they receive exactly nothing.

My angst stems from the worry that Nolan will be denied all services once he turns three years old, which will mean that he will begin to lose ground in the two "interim" years between early intervention and elementary school. At least once he's in school, there will be regular classroom evaluations to monitor his progress. A child on a 504 in preschool receives no regular monitoring.

Of course, all of this angst is premature. For one thing, Nolan has another 6 months or so before our big CPSE meeting. For another, Nolan's score of 117 was not a percentile rank. It was the standard score, which translates to a percentile rank of 87%. Still wonderful (and ahead of most of his hearing peers), but not so amazing as to have him nearly ready for kindergarten at the age of two. His expressive score is at 58%, a little better than average. And his articulation is at 38%- at the low end of the normal range.

Our speech therapist wants him to remain in therapy, which is wonderful. She mentioned the need for ongoing therapy to maintain his language level, and the fluctuant/progressive nature of his loss to date. His loss used to be 40dB rising to normal, as estimated from ABR- it is now 60dB rising to 35dB in his better ear (moderately severe rising to mild), and 60dB rising to 45dB and dropping back down to 55dB in the other ear (moderately severe rising to moderate). We have another hearing test on the 23rd of November, so we'll see if those levels have stabilized.

We'll cross the CPSE bridge when we come to it. Hopefully our local school district will understand the needs of hard of hearing children to continue with speech and language therapy. In the meantime, I'm glad that we have a nice, long break from the formal testing!