Preparing for John Tracy: Medication

I ran down to Rite-Aid to pick up Nolan's Nexium prescription. This is slightly unfortunate timing, because it means that his prescription will run out during our trip to John Tracy. We have two options to obtain enough medication for the little guy:

1. Implore the insurance company to approve some extra medication prior to our trip, so that we will not run out during our three week stint in California.

2. Go to California, run out of medication, and get the prescription refilled from a distance.

We're attempting option 1 first, hoping that our insurance company will approve the extra medication. If that doesn't work, then we'll go pharmacy-hopping in California to find a place that stocks Nexium (the CA pharmacy will have to call our pharmacy to get the prescription).

In any case, we're getting some final ducks in a row before our trip out west.

Eleven days and counting!

Sounds Like...

Nolan, sans aids

I was taking a shower when Nolan walked into the bathroom and declared, "I want pizza!"

He just had dinner, so this proclamation was rather random and unexpected. I questioned him about his request, and he repeated, "I want pizza! Purple pizza. Downstairs."

I assumed he was talking about pretend food in his play kitchen, so I finished my shower and came downstairs to a very impatient boy.

"My PIZZA! I need it!"

Nolan has been eating very well for the past few weeks, so I figured he had a hankering for some Little Caesar's. He's technically not allowed pizza because of his reflux diet, but we've cheated once or twice, so he knows what it is (and he likes it).

"Nolan, honey, we don't have any pizza."

He grabbed my hand and shouted, "RIGHT THERE!" and took me over to the fruit bowl. Which was full of peaches.

I repeated the word "peaches" several times, but he was sans aids and kept repeating "pizza."

He's completely below the speech banana without aids, so we have to do a lot of shouting or be very close to his ear for him to hear us unaided. I've always wondered how Nolan manages to "hear" without hearing aids, and now I'm starting to figure out his strategy. When he's presented with an unfamiliar word and doesn't have his hearing aids in, he fills in the "blank" with a word that sounds like the vague gibberish coming from our mouths. Hence, a peach is a pizza. It is a new word, sounds like one he knows, so he plugs the known word into the fuzzy blank.

We had this happen the other day at the creek, too. He asked where where we were going, and I told him we were going to the creek. "The beach! We going beach!" I must have repeated "creek" fifteen times before I dug the aids out of their waterproof box and put them in his ears. As soon as I did that, he said, "Oh, creek. We play at creek." He didn't know the word "creek," so he heard something like "ee" and filled it in with "beach" from the context of the sentence.

It's really rather clever. It explains why some of his vocabulary is a tad confused, however- why he confuses categories and labels for objects, etc.

On that note, Nolan yanked his hearing aids out this evening and hid them. I'm not sure what that is about, since he's been so attached to them lately that he'll howl when we take them out. It might have something to do with the excessive humidity lately, making them highly uncomfortable to wear. I'm off to do a hearing aid maintenance check just to be sure everything is in working order!

Urology Visit Completed

Yesterday's appointments involved a whole lot of "hurry up and wait." I had the boys up at 6:00am and we were on the road by 6:30am, to arrive at Buffalo Children's in time for Nolan's ultrasound. We checked into Admissions and proceeded up to Radiology on the second floor. On a side note, everyone in Admissions now recognizes us, which makes things a little smoother (Oh, it's Nolan- here's your paperwork!) but is a tad disconcerting-are we really there that often?

I figured drinking 16 oz. of liquid would be the easy part- Nolan is a juice addict and normally would suck that volume down in a heartbeat. Unfortunately, this morning he decided he wasn't
thirsty. After much cajoling, begging, and putting the sippy cup to his lips, he finally drank 8 oz. They called us back for the ultrasound a little early, so I was hoping it was enough to get good pictures.

By some small miracle, his bladder was full and the ultrasound tech got great scans of his kidneys and bladder. Matthew was hovering over the tech's shoulder and had a fine conversation with her:

"What are you doing?"
"I'm going to scan your brother."
"You're going to SKIN him? How do you do that?"
"Scan him. I'm going to scan him, not skin him."

Matt looked slightly disappointed, as the appointment was far more boring than what he thought it would be. He did impress the tech, though, when she showed him the blood flow moving on the ultrasound. Matt told her, "Yes, the blood moves the oxygen around." Thank you, PBS, for your fine science education!

After the ultrasound, I had to kill a full four hours of time. Our follow-up appointment was at 1:00pm, and the parking garage was full. This meant I didn't want to risk leaving for a trip to the McDonald's playground, because there would be no parking when I returned (parking is in scarce supply at Buffalo Children's- it was nearly full when we arrived at 8:15am)! We camped out in radiology, playing with the three broken toys in the waiting room. Did I mention that Buffalo Children's has almost nothing for children to do while waiting for tests? Just sayin'...

We ate lunch in the cafeteria, which involved Nolan spinning in circles with his arms out while Matt raided the ketchup packet bin. I'm not sure if any food was consumed, but we killed 30 minutes and I was grateful that no one was crying or fighting for a full half hour.

After lunch, we headed up to urology and the boys watched some TV. The only toy in this area was a very dirty toddler play table. We still had an hour to kill, and the boys started whining and becoming difficult. I can hardly blame them- this was a very long, boring day!

The lady next to me asked, "What time is your appointment?" I told her it was at 1:00pm, and she said, "Us, too!" The family next to her said their appointment was at 1:00, too. After some general discussion, we realized all ten waiting families had appointments for 1:00pm- with the same doctor. There was no sign-in sheet, and the office was still closed because the office personnel were at lunch. I figured there would be a giant free-for-all at 1:00pm.

I was right, as the shutters over the desk went up at 1:00pm and everyone in the waiting room scrambled to get in line to put their name on the sign-in sheet. All appointments were at 1:00pm, but they take you in the order of the names on the sign-in sheet. What a crazy system!

We were finally called and Dr. W. walked in with his medical student. Luckily he remembered Nolan's history, and he let us know that Nolan's ultrasound was completely normal. We were expecting this, because it was normal last time, and now that the blockage is removed, there should be no cause for further problems. He did ask if Nolan was completely toilet trained, and I told him that he was not.

I was hoping that we would be totally discharged from urology at this point, because it would be nice to cross a specialist off the list, but he wants to keep Nolan until we can prove a fully functional bladder. This requires complete toilet training, so we will return next year for another ultrasound and follow-up appointment. If, at that point, the ultrasound is clear and Nolan is completely toilet trained, we will be discharged from urology.

Now there's an incentive to toilet train! Hopefully, by this time next year, Nolan will be sporting underwear and a smaller list of specialists!

Check, Check, and Oops!

I have been checking items off our "list" as the trip to John Tracy approaches. Yesterday, I put the audiology packet into a large envelope and took the two boys to the post office on a little "field trip." I dread going to the post office, because while I am standing in line waiting to mail something, the boys are invariably over at the postage scale, seeing how much it might cost to send a brother to Abu Dhabi. We mailed the document without creating too much havoc at the post office, thank goodness.

Final documentation mailed into John Tracy: Check!

We plan on visiting Disneyland from July 17-18. I decided to get on my beloved Hotwire to pick out a hotel. Last week, I saw a three star for only $55 per night, close to Disneyland. When I checked this time, nothing popped up under $80. I should have booked much, much earlier! I scrolled through the listings and saw the Doubletree listed through Hotwire's partnership with hotels.com. It was $81 per night. I was so excited- the Doubletree next to the Anaheim Convention Center is nice and less than a mile from the front gate. I started clickety-clicking and got that puppy booked before the offer disappeared.

Hotel for Disneyland: Check!

I printed out our hotel receipt, and noticed the address looked a little funny. It wasn't on Harbor Blvd. (the one next to Disneyland), but on The City Drive.

Booked the wrong hotel for Disneyland: Oops!

The good news is that this hotel is still a 3.5 star hotel, and is 3.5 miles from the resort. There is a complimentary shuttle that runs every half hour, so we won't have to pay Disney parking fees on top of the hotel parking fees (newsflash: Disney area hotels charge about $13 per day in parking fees).

Nearly everything is done for our John Tracy trip- I just need to print out our Southwest flight information and put it into the packet of paperwork for our trip to Los Angeles.

Tomorrow we have a very long day planned. Nolan has his annual renal and bladder ultrasound scheduled at 9:00am (monitoring for posterior urethral valve complications). This means we need to leave Jamestown by 7:00am, which means I need to have Nolan up at 6:00am to get his Nexium down and eat breakfast. The paperwork requests that he drink 16 oz of fluid in the half hour prior to the ultrasound, and then not pee until the scan is completed. Doctors are so funny!

He'll drink easily enough, but there is no way to get him to "hold it" at this age. I'm not too worried since we haven't had any bladder infections (just the same random fevers Nolan has always had, that don't seem to be connected to anything in particular). I don't expect any surprises at this visit, and if we're lucky, we can move onto less regular monitoring.

Our "follow-up" appointment is at 1:00pm at the hospital, which means I get to entertain two very young children in a toyless place for about 3 hours. Hopefully they'll find the gift shop and parking garage interesting places to walk. Dear DVD Player, don't fail me now!

Unsqueal

So, hypothetically speaking, if your child's hearing aid begins to emit the amazingly high pitched squeal known as "feedback," it might be a good idea to give the hearing aid a thorough once-over. The problem might not be outgrown earmolds, but tubing that has cracked nearly in half.

The good news: the unremitting squeal is now gone.
The bad news: we can no longer locate Nolan by sound.

Hearing aid maintenance by Mommy: fail.

Forgot the Kitchen Sink...

Upon hearing about our Buffalo trip this morning, the boys decided to pack some snacks. While I was in the shower, Matt took out our cooler and filled it full of everything in our pantry: raisins, fruit leather, mini-marshmallows (I didn't know we had any!), "chewies" (gummy snacks), breakfast bars, Dennis's power bars for running, and cheesy crackers. Of course, the marshmallow bag split open during their endeavor, so they had to consume half the bag a few.

They were so proud of their "packing," and when I commented on the high proportion of junk food, Matt proudly exclaimed:

"Oh, Mom, we packed all the fruit, too!"



I'm pretty sure 5 bananas, 6 peaches, 4 apricots, a quart of blueberries, and 7 plums will stave off starvation during the 2 hour drive.

I think I have a little "re-packing" to do!

Squeal

Pool play-dates are the best!

Nolan's earmolds don't look terribly small for his ears, but over the last two weeks they have started to squeal more and more. This is the last pair of "free" earmolds we will get, because we wrote earmolds and batteries into his early intervention paperwork as assistive technology- trust me, saving that $120 per earmold set has been a lifesaver! Luckily, Nolan's growth has been slowing, so we only need earmolds every six months or so. When he was a baby, we required earmolds every other week, and often had to have them double-dipped and airmailed so he wouldn't outgrow them before they arrived! This appointment will also give him spanking-new earmolds just before we go to John Tracy for three weeks.

I wanted to get up to Buffalo last week for the earmolds, but our Ford Ranger decided to fail inspection, which meant we would need to spend a hefty $2200 to fix it. Since the truck was only worth about $3500, we declined the repairs and spent the week as a 1-car family. Driving Dennis to-and-from work was not compatible with a trip to Buffalo (which is four hours in the car, round trip, not including the appointment time), so I rescheduled the appointment for this week. In the meantime, we traded in the old truck and bought a new Toyota Tacoma (four doors with towing capacity). We love the new truck; the new car payment, not so much!

The good news about moving Nolan's earmold appointment was that we were able to have our "water play-date" as planned. Eleven children, one slip-n-slide, two kiddie pools, and lots of sunscreen = enormous amounts of fun. Nolan had a blast running around with all the other kids! The bad news is that we have two medical appointments in Buffalo in one week. Nolan is not a fan of long car trips or doctors, so we'll just have to plug "Cars" into the portable DVD player and hope for the best.

Nolan's Panic Attack

Playing in the dirt requires frequent baths!

Last night, the boys were playing happily in the tub. "Swimming lessons" was the game, and they were twisting and "floating" and splashing with great delight. Then suddenly, Nolan became hysterical. Not just a little bit upset- he was shrieking with absolute terror and clawing his way out of the tub.

This induced much panic on my part, wondering what in the world could be wrong with the boy. I tried to pry his little wet body off mine, but he held fast. I tried to soothe him, to no avail. Finally, I managed to make out the words he was screaming.

"Ear is BROKEN!"

This set my heart beating a little faster, unable to process what he was saying. I wrapped him in a towel and tried to calm him, but he couldn't hear me. He just latched his arms around my neck and wailed, inconsolable for about 15 minutes.

Then it struck me. He was lying in the water, with his head half submerged. He had water in his ears! This happens to many children, but for Nolan, it eliminates all of his residual hearing. He had gone (temporarily) completely deaf. I picked him up, tilted his head to the side, and tried to gently tap with the towel to clear the water.

In a few minutes, he was right as rain. The water left his ears and he had his residual hearing back. He could hear me shouting to him that everything was OK, that it was just some water in his ears.

At least he was able to communicate what was scaring him, and we were able to (eventually) comfort him. I have a feeling he'll be less inclined to dip his head underwater in the near future, though!

In Which Mommy Needs to Stop Talking in the Third Person

Mommy helps Nolan get a drink of water.

Nolan used to have a decent grasp on pronouns, but lately we've noticed the following:

"Nolan want go outside."
"Mommy give Nolan candy!"
"That toy Nolan's!"


Pronouns have disappeared from Nolan's speech. Perhaps it is a direct result of this:

"Mommy said it is nap time!"
"Give that candy to Mommy."
"Mommy saw you take the toy away from Matthew."

It can be so easy to slip into this language pattern. Mommy I will not neglect pronouns from this point forward!

Official Audiogram and Information for John Tracy

I received the packet of Nolan's hearing tests/hearing aid settings in the mail today. This is the last documentation required for John Tracy's Summer Session, so I am pleased to have it! I am going to make a photocopy on Monday (so that we have a copy in case the other one gets lost) and then mail it to the Clinic.

Nolan's audiogram is below (copied onto a larger graph for photographic purposes). The "teaching audiogram" used below has different categories of hearing loss than typically used, so disregard those levels. Nolan's hearing loss is not in the "severe" category, but "moderately severe rising to moderate." For reference, normal hearing in children is above the 15dB line. Nolan cannot hear any sound above the lines on the graph (unaided). Basically, with his hearing aids off, he can hear dogs barking and babies crying, but none of the sounds of speech.

Over time, Nolan's hearing loss has fluctuated a great deal. When he was born, he had a 40dB loss rising to borderline normal hearing (with present OAE in his right ear). Obviously, this is no longer the case. Still, we've had improvements and decreases in hearing over time- I created a table to show his hearing levels, with the total change from May 2008 (first booth test) through May 2010. The first two dates are estimated hearing levels from ABR testing.



There is a net loss at each frequency, going from a mild/moderate loss to a moderately severe rising to moderate loss. I am interested in obtaining more bone conduction testing to determine how much of Nolan's hearing is conductive vs. sensorineural. For amplification purposes, it doesn't matter: even if there is a conductive component, it is permanent and his hearing aids had to be increased. On the other hand, it would be nice to know if there is a conductive component to gauge how "progressive" his loss might be. John Tracy will perform a full battery of tests when Nolan is at the clinic, so I am hopeful that a bone conduction test will be included.

Exactly One Month And Counting...

We are officially in "countdown mode" for our John Tracy Clinic session. In exactly one month, we will board our plane and fly off to sunny Southern California for three weeks of education and fun!

I am still waiting for our audiology report from Nolan's most recent hearing test, and for the rest of the audiological information requested by the John Tracy Clinic staff. Our audiologist has been on vacation, and I am sure the requested materials will arrive soon.

We are still sorting out the logistics of our stay. Matthew is too young to attend the sibling program offered by John Tracy, so he will stay with his grandparents. Fortunately for us, both sets of grandparents live within two hours of the John Tracy Clinic! Matt is only four, though, and we felt three weeks would be too long for him to go without a parent present. Dennis will stay part-time with Matt, and part-time with Nolan and me in the apartments near John Tracy.

I will not have a rental car for the three weeks, so I won't be able to drive anywhere during the week. With family so close, however, I am sure people will come to visit over the course of the session. We also get out at noon every Friday, so we are plotting many fun adventures for the weekends!

Our three weeks will be very full of experiences. We fly out on Dennis's birthday, so that Saturday will be filled with travel, checking into the Annenberg Apartments near John Tracy, and a birthday dinner. Our general plan for Sunday includes leaving Matt with my parents (if they are free, of course) and having Dennis drive Nolan and me down to the John Tracy orientation. We can both attend the orientation, and then Dennis can drive back "home" to stay with Matt and his parents overnight. Nolan and I will be on our own throughout the first week, but family will come and pick us up on Friday.

The next weekend (July 16-18) is "Disney Delight," and I plan on booking a hotel through hotwire or priceline. We want to do Disneyland and California Adventure, and I am sure extended family will join us on our outing. I can't wait to see Nolan's face when he sees his beloved "Mitty Mouse."

The toughest part of the trip will be the separation of our family unit over the three weeks. The opportunity is priceless, however, and I cannot wait until we embark on our learning adventure!

General Update, Or In Which Nolan's Tonsillectomy Has Amazing Benefits

People have been asking if Nolan is three lately. This wouldn't normally be a striking question, since he will be three in a little over two months. Earlier this winter, however, we had been asked how many months remained until he turned two.

Nolan isn't really very short, but his "toddle" run and low weight made him look a tad younger than his true age. He was also tired much of the time, so we had to carry him a lot- adding to the age confusion.

Three months ago, we couldn't walk the length of the mall without Nolan crying and falling to the ground, too tired to go on. I actually had visions of carrying a five-year-old Nolan on my hip to the bus stop, because he literally couldn't walk more than 100 feet without collapsing in exhaustion.

Then he had his tonsillectomy and adenoidectomy this April. I expected a reduction in snoring and better breathing. We had hoped for better sleeping. We did not expect the sudden burst of energy and general health following the procedure. Nolan's post-tonsillectomy health improvements include:

Weight: While we were at the vet's office, I decided to throw the boy on the scale. It was accurate for our cat, so I'm pretty sure it was accurate for Nolan. The reading? Twenty eight pounds. Twenty eight pounds. Less than a year ago, he was nineteen pounds. This is some major weight gain, folks. If the vet's scale was accurate, he's now in the 20% range for weight. Much of this improvement was made with the Nexium, but the tonsillectomy seems to have added some benefit to his appetite. We have discontinued the DuoCal, and he is eating food without calorie supplementation.

Energy: Nolan has become, frankly, a bit of a terror with his energy level. Running laps around the house, running ahead of us in the mall, racing his brother in the driveway... doing what a typical two year old should do.

Height: Nolan's height was never much of a concern, but it had stalled out and dropped from the 80% to the 10% mark. He is growing again, and is now almost 36" tall. We're happy to see him climbing the charts and outgrowing his size 24 month shirts!

Happiness: While his screaming/crying episodes are not completely gone, they are greatly diminished. It is a rare morning that we have an hour of "inconsolable Nolan." His general happiness is improved.

Sturdiness: Perhaps because he is running more, his legs seem a bit more sturdy. He doesn't fall as often when he runs, and he seems less "loose" in his stride. This is probably a result of better muscle tone, since he is running around a lot more with his increased energy.

We are absolutely thrilled that Nolan is doing so amazingly well. You may have noticed that I didn't include "sleep" in the benefits- "sleep" seems to be a mixed bag. Since the tonsillectomy (2 months ago), Nolan has slept through the night six times. This is good, because it is approximately six times the number of nights he has slept through since birth. It is not, however, the improvement we had hoped for.

He also still snores, and has some noisy daytime breathing. We're not sure what to make of that, but the sleep study in August will give us more information on whether he is having any apnea. Judging by his increased energy levels, his quality of sleep must be improved (even if the quantity is not greatly improved). His nighttime wakings may also be a product of his severe reflux, so we're trying not to read too much into his nighttime capers.

If we had known a simple tonsillectomy/adenoidectomy would have had this much effect on Nolan's well-being, we would have been much less worried about having the surgery done. Here's to more energy and more growth from this point forward!

Nature Books

Summer is in full reign here, with preschool ending this week and more free time on our hands. With everything in full bloom and green plants growing everywhere, I decided to take the boys on a nature walk. I figured we could make our experience books, and learn about local plants along the way. Buckets in hand, we headed down the street to the empty lot "Magic Forest."

I let the boys select whatever struck their fancy- keeping a careful eye out for poison ivy. They gathered rocks, flowers, leaves, grass, and sticks. We headed home, and used crayons to make impressions of our materials. The flowers were too three-dimensional to do impressions, so we painted them and pressed them to paper.

I cut out the impressions, and we made our nature books.

Nolan was able to do some of this project (collecting the items, gluing, and painting). I had to do the cutting for him, though Matt was able to make his book with almost no help from Mom.

There was a lot of language learned today: various flower names (we actually found Forget-Me-Nots and Chickory in the empty lot), tree types (pine vs. deciduous), and rock characteristics (color, and whether it was shiny or dull).

The kids always want to keep things they find on our nature walks, and this way, they can!

Speech Sample, 33 Months: In the (Play) Kitchen

Nolan spent much of today making me "coffee" in his play kitchen. His imaginative play has really blossomed lately!

Starting the Process for Obtaining a FM Sytem

Hearing in a noisy environment

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!

Preparation Pays Off

All of our activities related to our Pittsburgh mini-vacation definitely paid off- Nolan was highly interested in the sights and sounds of the city.

The actual Duquesne Incline turned out to be far more exciting than the chalk version, to Nolan's great delight.
If Pittsburgh rocked his little world, I can only imagine what California is going to do for him!

Countdown to John Tracy: 1 month, 9 days