Tuesday, September 28, 2010

Language Sample Deletions

Every month or so, I take language samples to get a glimpse of Nolan's general language and any areas that might need some work. Frankly, his language is really awesome, so there are only little things to work on at this point in his young life. Things like articles, pronouns (everyone is a "he"), and other grammar issues common to all three year old children. He also has a nasty habit of being very, very honest. Recent items I'd like to delete from the September Language Sample:

  • You have a squishy belly, Mom.
  • That man smell like poo-poo.
  • [Hand in diaper] I can't find my marbles!
  • I find my boogers in my nose!
  • That man have big booms.*
  • [Singing loudly in the store] I go pee pee in the potty PEE PEE PEE PEE!
  • Why he don't have hair on his head?

  • One day, if we're lucky, he'll learn that discretion is the better part of valor. Until then, I have to come to terms with my squishy belly. It might be time for me to get a gym membership!

    *The "man" was a very burly woman in the local mall. With large "booms." She was not amused.

    Monday, September 27, 2010

    The Future is ON

    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!

    Thursday, September 23, 2010

    Phone Call Marathon

    The boys with Pete the cat

    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!

    Wednesday, September 22, 2010

    Unabashed Brag Post

    Perhaps we can just skip the "pre" in the "pre-literacy" skills for Nolan's goals. It looks like he wants to cut to the chase and start reading!

    Thursday, September 16, 2010

    Just Thriving

    Nolan loves school a lot more than carousels

    I am so glad we chose the particular mainstream preschool Nolan attends for his preschool education. The school is just absolutely perfect for him. When we left John Tracy, a part of me lamented the lack of a JTC-like preschool in our area. While no preschool is going to have everything that John Tracy offers, our little local mainstream school comes pretty close.

    Nolan's class is small, for a mainstream preschool. I am not quite sure how many children are in the class, but I believe it is somewhere in the neighborhood of 12- with two teachers. The room is quiet, and Nolan is bathed in a developmentally appropriate curriculum. Plus, the teacher truly cares about his development and well-being. Weekly guides let us know what they are focusing on each week, in addition to the particular skill sets being developed. I feel informed, supported, and I know that Nolan is being lovingly taught the pre-academic skills he will need in a few short years.

    The best evidence of all is that Nolan is just thriving in his preschool class. On Tuesday, he informed me that he did not get to paint, but he did "read" a story (circle time). Today, he was all smiles as he hopped out of class and his teacher handed me a plastic bag containing Nolan's first masterpiece. He easel-painted today, and let me tell you- that boy loves his paint. The paper was saturated with pink and blue tempera, and he talked about it all the way home. If anyone mentions his teacher's name, he just glows with excitement.

    I can't wait to see what this year is going to bring to Nolan!

    Tuesday, September 14, 2010

    ENT Visit

    Wiped out from running

    I am not quite sure how to fit the events of yesterday's ENT appointment into one post (it should really be three separate posts), but I am going to try.

    The Never Ending Ear Infection

    The "gunk" in Nolan's ear was not a sign of active infection. The ENT took a look and noted the material was definitely occluding the ear canal, but the eardrum and ear canal skin looked great. There did appear to be a large perforation behind the tube. She took him back to the Big Ear Sucker of Doom and removed the gunk. She also looked at the eardrum under the microscope, and noted the tympanostomy tube was actually lying on top of the eardrum. She removed it, and the "perforation" disappeared- it was just an optical illusion cast by the shadow of the displaced tube.

    I was so greatly relieved by the news of the finally-resolved infection, that I didn't notice her grabbing the pneumatic otoscope. She made a "hmmph" sound and I looked up. She looked at me and said, "Fluid."


    So the never-ending-ear-infection is gone, but a new one is starting. The left tube is starting to extrude from the other ear as well. These were intermediate-length tubes, so they should have lasted for at least a year. They lasted for about 4 months.

    Surgery is scheduled for October 12 to place a fourth set of PE tubes. This time, they'll be "long-term" tubes- I suspect they will be placing "T-tubes" into his ears on this occasion. The negative of T-tubes is that they must be surgically removed. The benefit is that they will not fall out in another 3 months, so we should be able to go for a longer period of time between surgeries.

    The Random Hearing Test Results

    Obviously, we need to figure out what Nolan's hearing levels truly are, and why his hearing levels fluctuate so much. We also need to determine the exact type of hearing loss for each frequency. Since we have three different bone conduction results from two different sites, we are going to have a full hearing test run at Buffalo Children's (WCHOB) sometime after his fourth set of tubes is placed. This test will be used as a "referee" for all of the other tests. Unless, of course, we get a fourth result. Anyone want to take some bets?

    The Whole Apnea Thing

    We're quite thrilled that the central apnea has all but disappeared. Unfortunately, the obstructive apnea has only gotten worse with time, and the ENT is not pleased. The neurologist labeled the obstructive apnea as "moderate," but the ENT heartily disagrees. It is quite severe, but she believes the neurologist downgraded her reading because she doesn't want to put a C-Pap mask on a child with a recessed mid-face (the pressure of the mask would only cause more mid-face retraction as his skull grew).

    While the neurologist wanted to try a few steroids to see if they would help with the apnea, the ENT was appalled at this idea. Those drugs are only used for very mild obstructive apnea- and they're only used for apnea caused by congestion. Nolan's apneas are completely unrelated to congestion (for that matter, so are his chronic ear infections).

    To determine the best course of action, the ENT wants to find out why Nolan has such severe obstructive apnea. Since he's going to be sedated for the tubes on October 12 anyway, she is going to perform a flexible bronchoscopy while he's out. A scope will be passed through his airway and into his lungs to find the level of obstruction. We should find out the results on the day of the procedure, so we will have more guidance on how to treat the remaining obstructive apnea.

    We are going to have a busy October, but at least we'll have a bit more information on Nolan's hearing and breathing issues!

    The First Day of School

    Sunday, September 12, 2010

    Preparing for the ENT

    The home front has been quite busy recently, with getting IEP services into place, preparing for Nolan's first day of preschool this Tuesday, and a marathon (Dennis, not me).

    Very rare: a picture of the entire family

    Things are ticking along as expected: we have secured a Teacher of the Deaf (TOD) for Nolan, and she is wonderful (we know her through various events with the local Jr. Deaf Club). We'll start his monthly monitoring services soon, and she'll be instrumental in helping us set up his FM system.

    We have an appointment with the ENT tomorrow. As far as I can tell, Nolan's ear doesn't look great. Mr. Otoscope says there is still a lot of whitish gunk* in his ear canal, though the tube is visible and clear. I'm not sure if the gunk is simply leftover material from an infection that has been killed off, or if it is a sign of active infection. I guess we'll find out tomorrow- I certainly hope the infection is gone.

    We also have to ask the ENT for her opinion on the bone conduction testing from the John Tracy Clinic. We had Nolan's bone conduction scores run again in Buffalo two weeks ago, but we have not received the report in the mail. This is rather unusual, since we usually have the report within a week or so- because of this, we won't have the results to show our ENT. In the long run, I suppose it doesn't matter. I might request a referral to the Cleveland Clinic to obtain an audiology and ENT consult- we aren't making any headway with the confusing results in Buffalo, so perhaps another site can sort things out for us. In any case, we have to get a handle on Nolan's general hearing levels and type.

    The lowest priority issue will be discussing the sleep study results- we've chosen the "watch and wait" method of treating it, even though we know it is unlikely to simply disappear over time. The ENT also handles sleep apnea, so I'm sure she'll discuss these results with us again. We've already gone over them with the neurologist, so I expect there won't be very much time spent on this particular area of concern.

    Tomorrow will be a busy day, but hopefully we'll walk out of the office with a few more answers than questions!

    *I'm pretty sure gunk is the technical term.

    Sunday, September 5, 2010

    Getting Crafty and the Unrelenting Infection

    I used to love scrapbooking, but then tiny fingers came along, and the scissors and other tools simply created mayhem when I tried to get anything done. This is why Nolan's baby scrapbook goes up to the ripe old age of Four Days Old. A friend introduced me to digital scrapbooking, and I may never turn back! Here is a page I am creating from Nolan's John Tracy experience:

    Nolan is still battling his ear infection. Honestly, I have no idea what the ENT is going to do when we return on September 13 - the potential consequences of this ear infection terrify me. I have to call the office on Wednesday, because that is the date we are supposed to stop using the medication in Nolan's ears. If the infection is still present, I am loathe to stop medicating (if the meds are not eradicating the infection, at least they are preventing its spread). We are due up in Rochester next weekend (Dennis is running in the Rochester Marathon), and I am afraid Nolan's infection will rage out of control if we don't figure something out soon.

    Nolan has been fairly accepting of his one-eared status, though he told us the other day, "Maybe we go doctor and doctor fix my ear. Then I have TWO hearing again!" He desperately misses hearing from his right ear: this boy loves his sound!