Wednesday, July 28, 2010

Wednesday: What a Day!

I received an email last night stating that Nolan's IEP meeting will be on August 5. I have to make a call to postpone the meeting, because the school district has not arranged for the necessary formal testing on Nolan's behalf. If we do have the meeting on August 5, it will be a very short one. We can't objectively formulate goals without having the necessary data.

Nolan's slight ear drainage from last night did not disappear. He had some slight moisture in that ear this morning, so I told our JTC audiologist about the situation when we took him in for his aided audiogram. Since only his right ear was affected, they played the sounds over the soundfield through the left speaker. This way, his "good" ear was closest to the sound source. Since a soundfield test isn't reliant on the "bad" ear to perform, we were able to get a reliable aided audiogram.

The audiologist looked in his ear after the test, and let us look to see what a nasty ear infection looks like. The drainage was getting worse- I figured he just had serous otitis media. Kids with tubes sometimes have this happen with fluid build-up. Unfortunately, he had acute otitis media with effusion. We spent the rest of that morning on the phone, calling his ENT in New York to get a prescription for Ciprodex drops.

As for Nolan's aided audiogram, it was abysmal. His aided thresholds are not set well for his level of loss- he should be getting normal hearing across the board with his level of loss. Instead, his aided audiogram revealed that he is hearing at 55dB for the 250Hz point (moderately severe), at a moderate level for the 500Hz frequency, normal for 1000-2000Hz, and at a moderate level (40-45dB) for the 3000-4000Hz frequencies. His aided speech awareness threshold was at 30dB, which is a mild hearing loss. I'll include pretty charts and graphs when I get more time. The "magic box" showed that his aids were set too low for the low and high frequencies.

When we get home, we'll have to talk to the ENT about the significant conductive component to Nolan's hearing loss, and we'll have to talk to the audiologist about his aided audiogram results. Our audiology clinic doesn't believe in aided audiograms, but Nolan's hearing aids are obviously not set correctly. Truthfully, they're set quite poorly-and we would never have known this information without John Tracy. We'll have our hands full with sorting out information when we get home.

We managed to make it to the auditory skills lecture today, and I was thrilled to see Nolan's video with his speech language teacher. I want to convince her to move to Western New York. Perhaps the beautiful fall leaves will convince Miss C. As long as no one tells her about winter, we'll be in the clear! In the video, Nolan displayed auditory skills with selecting items from descriptive terms- an emerging skill. He also displayed his emerging sequencing skills. We don't have many auditory goals for his IEP, so the auditory evaluations will allow us to formulate some appropriate goals for the little guy.

At lunch, our ENT's office still hadn't called back about the ear infection. Luckily, I am in a school filled with parents who have similar ear issues. Ask around, and you'll have a free bottle of Floxin thrown your way (with the label written in a foreign language- Floxin with a twist)! I crept into Nolan's classroom to give his ear some drops during nap time. Poor kiddo- he really hates ear drops. Still, the sooner I get this treated, the less likely he is to perforate around the blocked tube.

We met with his SLT after class today, and went over his testing results. He is age appropriate (or better than age appropriate) for his receptive and expressive language. He has a delay in articulation, which is no surprise (we had the same results from our testing at home). We also got some scores for auditory skills and informal information from the PLE (created by Daniel Ling for assessing children with hearing loss). We will get a report which will aid us in creating goals for Nolan's IEP.

During this meeting, I spent a small amount of time on the phone, convincing the nurse practitioner that I knew that Nolan had an ear infection (yes, purulent material draining from an ear with a tympanogram showing a blocked tube is probably an indicator of infection- as is seeing the infection through an otoscope). I did manage to get a prescription for Ciprodex sent to a local Rite Aid, so we were soon on our way to relief.

After school, we hopped over to the good playground on Flower Street, then to Fatburger to have dinner with our bloggy buddies. Then we were off for our tour of inner-city Los Angeles neighborhoods in the attempt to find our Rite Aid. On the other hand, Nolan did get exposure to words like "felony," "petty theft," and "under arrest." At least, I think theft is what the police cruiser was sent to Rite Aid for... we saw two more police cars in active crime-prevention mode on the way home from the pharmacy.

Nolan is definitely a bit "wily." He threw a MASSIVE tantrum in Ralph's grocery store, because he wanted to go to McDonald's. He wasn't hungry, he just wanted to play on a playground, was in pain from his ear, and was very, very tired. To the other customers in Ralph's today: truthfully, my child is not typically a screaming, writhing, hissing fit of fury.

We played on the lawn for a few minutes in front of the Annenberg Apartments, then got Nolan inside for a warm bath, ear drops, and bed. I read while he snuggled up to me and finally gave up the fight against sleep. He's out cold now, and hopefully the antibiotic drops will start to work their magic tonight.

Tomorrow is the last full day at John Tracy. Time has flown by all too quickly, but the information and support we have received are invaluable. This is the very best thing we have ever done for our family- we know a LOT more about Nolan's hearing loss, we know about what we need to do to help him reach his full potential, and we feel confident in his ability to be successful.

I am going to miss this place immensely when we leave!

5 comments:

Herding Grasshoppers said...

Wow! what a bummer that his HA's aren't benefiting him as well as they could, but on the other hand, look how well he's doing underamplified (well done, Moma and Dad) and imagine what will happen when his HA's get programmed better!

Only one more day - the time has flown. So glad you got to be part of this.

Julie

rouchi said...

Gosh, another infection!! I hate the thought of it, poor Nolan .I hope it is over soon.I am sure with the infection out and proper amplification,Nolan would hear so well.Yes, we too would miss the updates once you are back from there.

HearingExchange said...

Leah, You're doing a terrific job with this blog! I hope some doctors and audiologists are reading it as you write so well of the frustrations and difficulties parents face when their team is not entirely on the ball.

It is wonderful that you went out of your comfort zone and went to John Tracy. Parents need all the support that they can get and John Tracy is one such place.

Please remind me again where you live in New York and let me know if I can assist you in any way.

~ Paula

xraevision said...

Seems that many of the children in our group were using aids not set correctly for their loss. Fortunately, X's were perfect, which was one of the only pieces of good news we received at JTC. There is, indeed, a lot of hard work ahead!

Sorry to hear about Nolan's infection. I hope so much that those drops help diminish his discomfort enough for you all to enjoy your last day and a half. I sure am going to miss your daily updates from our home away from home!

Joey @ Big Teeth and Clouds said...

I can't believe it's been three weeks already! I imagine the time has gone so much faster for you.

Hopefully these results will help your audiologist see that there is some use in an aided audiogram. We don't get them all the time, but Julia has had them.