Because We Really Don't Like to Be Bored

Our follow-up with the ENT isn't scheduled until March 1, but I have a strong feeling we will be seeing her sooner than that. Not only because of the sleep study results, which are due in another 4-5 days or so, but because we have a new concern.

We have actually had this concern for a couple of months, but kept it close to the vest amongst all of the other ENT related problems we've encountered recently. I've also kept this new problem quiet because, frankly, it is a little scary to contemplate.

We think Nolan is having seizures.

One day, we were walking in the grocery store and he dropped to the ground, then was slightly confused for a little while. Most of the time, however, he simply stops and stares. We can be walking in the mall, and he will stop walking and stand, completely motionless, for 10-20 seconds. He won't flinch if you touch him, call his name, or pull on his arm. Sometimes he will blink slowly or twitch his mouth.

I have to call our ENT to get in early, or call our pediatrician to get into their office, because we need a referral to a neurologist.

I wanted to get one of Nolan's "staring spells" on camera, so I carried our flipcam with me wherever we went. Usually, by the time I could get the camera on, Nolan would be done with his staring event. I finally managed to catch one, on the way back from preschool when he was in the car.

This is definitely a new wrinkle. I deeply hope we are not seeing seizure activity, but are simply dealing with some "zoning out" behavior. Another thing to take as it comes, I suppose.




TRANSCRIPT: I repeatedly call Nolan's name, while he is staring, then ask him if he wants to come inside once his staring episode is over. He nods yes.

The Preschool Parade

Nolan currently attends a preschool program designed specifically for two year olds and their caregiver for two hours every Thursday. While he is already in a "program," we are in the process of making decisions regarding his placement for next year, when he will attend preschool on a more regular basis (and without my presence). Registration for preschool starts on February 2nd, so this subject has been weighing rather heavily on my mind recently!

Our area is rather rural, which limits the choice of preschools. In one way, this is almost a blessing- we don't have to fret over whether to send him to an auditory-oral type program, because we simply don't have one. Our choice is between sending him to a mainstream preschool, or a preschool for children with developmental needs.

In our specific situation, the choice to mainstream was rather simple. Nolan does not require any physical therapy, occupational therapy, and has no cognitive delay. Nolan's main developmental concern is the development of normal speech and language patterns, which is best served in a class with typically-developing language models children.

Having made the decision to mainstream, we are focusing our selection process on two preschools. One is the school Nolan currently attends, and the other is the preschool Matthew currently attends. We will call them "School A" and "School B."

There is a checklist to help narrow down the qualities desired in a school for a deaf or hard-of-hearing child, and I have looked over the list and have come to a decision on Nolan's placement for next year. Anyhow, here is an overview of the two schools:

Physical Environment:

Preschool A: The children stay in one room for most of the classroom time. The children do move to a "physical activity" room for part of the day. The floor is tiled with a large circle-time rug. The room is medium-sized. There is a fish tank in the room.

Preschool B: The children circulate between four rooms in a two hour period: a craft room, a circle-time room, a "centers" room, and a physical activity room. The craft room is tiled, the rest of the rooms are carpeted. All rooms but the physical activity room are fairly small.

For informational purposes, a larger room with a high ceiling will have more distortion. A smaller room will have more noise (volume). Pick your poison.

Class Size:

Preschool A: Usually 12 children
Preschool B: 20 children (with three teachers)

Transitions:

Preschool A: The children only move from their room once during the two hour period.
Preschool B: The children move through four different rooms in a two hour period.

Number of Classes/Week:

Preschool A: 2 days per week, 2 hours per session.
Preschool B: 2 days per week with the option to add a third day. 2 hours per session.

Familiarity:

Preschool A: Nolan knows the teacher as he currently attends this school.
Preschool B: Nolan is does not know the three teachers of Matt's school.

Number of Children With Hearing Loss:

Preschool A: 0
Preschool B: 0

Classroom Amplification Systems:

Preschool A: No soundfield or FM
Preschool B: No soundfield or FM

Lighting:

Preschool A: A mix of natural lighting and artificial lighting, well lit.
Preschool B: Mostly artificial lighting, well lit.

Noise from Adjacent Spaces:

Preschool A: Preschool is completely segregated from other areas and is not exposed to any other noise.

Preschool B: Preschool occurs in the midst of a space used by other organizations and may have noise from other sources throughout the preschool period.

Behavior Management/Structure:

Preschool A: Redirection is used for behavior management, slightly less structured in feel.

Preschool B: Redirection is used, "Sad Notes" may be sent home for a child who is having difficulty maintaining classroom behavior standards. Very structured.

Both preschools have a daily schedule, educated teachers, a variety of centers, well themed and planned activities, lesson plans, and teachers with great articulation/clarity. Both preschools use a variety of methods to tell stories, include visual props (like felt boards) and have a lot of music included within the program.

Both preschools are wonderful, and it is very hard to make a decision between the two. However, because Preschool A has fewer transitions throughout the day, is familiar to Nolan, and has a smaller class size (hence: less noise), we will be choosing Preschool A for Nolan's education next year.

Sleep Study Completed

This post might be slightly incoherent, since the Sleep Medicine Center does not dole out gigantic mugs of coffee to exhausted parents after the ridiculously long, sleepless night of a sleep study. I also have no pictures from last night, which is good because I'd really like to forget about the whole event.

It's not that the sleep study was bad in any way. Nothing causes pain, nothing hurts... there is simply no sleep to be had for the parent accompanying the child. Oh, the sleep center tries- they pushed two hospital beds together so that I could sleep next to Nolan all night. The technician was amazingly good- caring and gentle with my sweet boy. But there is, after all, a reason that specific children are referred for sleep studies: they don't sleep.

Nolan and I walked up to the ninth floor of Buffalo Children's hospital, having only one minor run in with a rent-a-cop. He wanted to know what we were doing at the hospital at that late hour. I debated telling him that I was there to case the joint and steal all their tongue depressors, but my better judgment prevailed.

After attaching about 6 bazillion wires to Nolan's legs, chest, and head, the technician let Nolan watch some Thomas the Train to calm down. After a brief attempt to attach the nasal cannula and the pulse-oximeter (insert "Nolan Screaming" soundtrack here), the tech made the decision to allow Nolan to fall asleep before attempting to put these final pieces of equipment on.

Nolan laid down, and after some crying and much back-patting, he fell asleep. The technician had access to the EEG readouts, and could tell when Nolan was in a really deep phase of sleep. He came in and we placed the pulse-oximeter on Nolan's toe. Then he slipped the nasal cannula on (only a momentary whine from Nolan), and then Nolan and I drifted off to a nice, cozy sleep.

Oh, that five minutes of sleep was nice.

Then the snoring started. Then Nolan woke up, and howled at the injustice of the nasal cannula. Then he fell asleep. Then he jerked suddenly, woke up, and howled at the nasal cannula. Snoring, waking, howling, jerking, waking, howling. Repeat this scene ad infinitum, and you will have the majority of our night. Sadly, this is rather typical of our nights at home (minus the excessive howling). Some time past 3:30am, he finally fell asleep for good and stayed that way until the tech woke us at 5:30am.

When the technician woke us in the morning, he was amazed at how often Nolan woke up. To shock a man who has run these tests every night for the past twelve years is an impressive thing, I suppose.

The technician can't tell us the results, so we will have to wait two weeks for the report to make its way to the ENT. I was able to see the CO2 monitor, which was pretty consistently at 49-50mm Hg. Dr. Google says that anything above 45 mm Hg is 'hypercapnia,' or too much CO2 in the blood (this can signify obstructive sleep apnea, so no big surprise there).

We left the sleep study center with goop-covered hair (no showers or facilities to remove it, and I didn't think Nolan would tolerate getting his head wiped down over the sink in the room). He is now home, bathed, and goop free, and running around as if he had the best night's sleep, ever.

Once I get Nolan's latest hearing test report from the audiologist, I'll call the ENT and schedule an appointment for about 2 weeks from today. Hopefully by then, the ENT will have both the latest hearing test results and the sleep study results and we can make some decisions about what might be going on with Nolan's hearing, Nolan's inability to sleep, and Nolan's tonsils/adenoids.

Now please excuse me, because I think I need a nap!

Getting Ready for the Sleep Study

I'm looking over the pre-admittance forms for Nolan's sleep study, making sure we have all our ducks in a row. There are several rules, of course. They include:

• No caffeine the day of the study. Time to stop feeding the kid coffee, I suppose.
• No makeup is allowed. He's going to be bummed when I take his eye shadow and lipstick away!
• No hair product is allowed. What? How are we going to do a mohawk without gel?

I did give Nolan's hair a quick trim, because they run an abbreviated EEG during the study. I figured the gel would be a little easier to wash out if his hair was on the shorter side. Of course, reading through the documentation, I ran across this little gem:

"All rooms are equipped with showers, except our Buffalo location."

I wonder how many baby wipes I'll go through, trying to get all the EEG gel out of Nolan's hair?

Anyhow, Nolan and I will drive up to Buffalo Children's tomorrow evening and will check into the hospital at 8:00pm for his sleep study. We will be released at 5:30am, unshowered and possibly gel-covered, and will make the 2 hour drive back home. I am scheduling extra nap time in for Thursday- I have a feeling I'm going to need it!

Hooked on Phonics...

Matt turned four a month ago, and has been increasingly interested in reading. He knows many sight words, but he really wants to figure out how the sounds combine to make words. To satisfy his curiosity, I bought a set of Bob books (the beginning reader set) and set him loose. He needs help with many words, but is starting to get the idea. We still have almost two years until kindergarten, and I have a feeling he'll be reading before then. All that speech therapy helps with phonemic awareness!

Anyway, here is a video of Matt "reading" one of his Bob Books (0 to 10):

The Results Are In, And They're... Interesting

No one gets cowlicks like Nolan does. No one.

After two abysmal attempts at getting hearing test results, we decided to change things up a bit by:

• Changing the time of day (doing a morning test instead of an afternoon test).
• Kicking Mommy (that would be me) out of the testing booth.
• Changing audiologists (unintended, but our audi called off unexpectedly).
  

These changes (plus the random good-will of a certain two year old) made all the difference in the world. Nolan marched into the sound booth, I told him I was going to "get some coffee," and left as they were checking his ears with an otoscope.

I sat outside for what seemed an eternity. Since sound proof booths are, well, sound proof, I couldn't hear what was going on inside. I always get nervous during these things, more for Nolan's cooperation and getting accurate results than for anything else. The long span of time was reassuring, because it meant that they were getting results from the little guy.

The audiologist came out and we sat down to discuss the results. My heart dropped a little when I saw this:

The red line is what his hearing was at birth. He even had present OAE (indicating healthy outer hair cells in the cochlea) in his right ear at birth. The purple line is from his left (good) ear in June 2009. A small drop from his levels at birth, but nothing drastic. The "X" line on the bottom is his left ear today. A flat line at 60dB. Definitely a big change! The "O" line is his right ear, and it is pretty consistent with what it has been since August 2008, so it is holding fairly steady.

His speech recognition thresholds were 50dB for his left ear, and 55dB for his right ear (a drop for both ears).

His tympanogram shows no fluid, meaning that middle ear fluid is not the cause for this most recent drop. His left ear does still have a tiny perforation that has not healed over yet from his PE tube that fell out in December. His right ear has some negative pressure. Keeping that in mind, the audiologist then showed me his bone conduction results:

These are the results from today's testing. The red line above shows his bone conduction results. The bone conduction testing bypasses the middle ear entirely, and tests the cochlea. Nolan is too young to test each ear independently, so the bone conduction results show the hearing ability of his better ear, when the middle ear is bypassed. Essentially, his better ear (probably his left ear) looks stable when you look at the sensorineural loss. The overall picture, however, shows that he has a deterioration of hearing. He has a mixed hearing loss now.

The good news is that the conductive component of these hearing losses is typically correctable. If the source of the conductive component can be isolated, then it can usually be corrected. There are a few possibilities for Mr. Nolan:

• The tiny perforation and negative pressure are causing that much of a hearing loss. This would be strange, since PE tubes cause small perforations and are not typically associated with a drop in hearing. Still, it is a possibility. If Nolan's perforation doesn't heal up on its own, surgery may be needed to patch his eardrum. Also, negative pressure might be affecting his hearing. So another set of PE tubes might be needed.
  
• Something else is going on with his middle ear. Something that we haven't previously detected, that is progressive and/or permanent. This may need exploration in the future, if his ears don't clear up after the typical PE tube treatment.

The problem with this type of loss is that we will not increase his amplification unless the conductive component proves permanent. Obviously, we don't want to increase the volume on his hearing aids, have his hearing improve from surgical means, and then have him blasted with too much sound. On the other hand, this means that he is underamplified and will remain underamplified for the near future. This kills me from a speech-development standpoint, because Nolan has recently lost the /K/ and /F/ sounds in his speech. We'll get them back eventually, but it is hard to know that he isn't amplified appropriately and there's not a darned thing we can do about it for the time being.

The plan of action is currently:

• Get the sleep study done and over with (January 20).
• See the ENT, probably sooner than March 1. I will call and set up an earlier appointment as soon as the sleep study is completed.
• If necessary, do a tonsillectomy and adenoidectomy. At the same time (if necessary), patch up his left eardrum. And possibly add PE tubes into the mix. Truly, our insurance company must hate us.
• Go back to Buffalo Speech and Hearing Center on April 12 for another hearing test. We need to get his ears cleared up, then check his hearing levels to see if the conductive component has disappeared or not. If it hasn't, his amplification will be increased and more exploration as to why it hasn't disappeared will be considered.

I'm a little worried about his under-amplified status, but thrilled at the prospect at correcting the conductive component to his hearing loss. We are going to have a busy winter, sorting this all out!

Houston, We Have a "Yes"

Up until last week, if you asked Nolan if he wanted to go outside, his answer would be:

"You go outside."

Or if you asked him if he wanted to have a snack, he would say,

"You want snack."

He didn't nod his head, never said the word "yes" unless it was in direct imitation, and would parrot whatever you said, word for word.

We have worked for months to get a spontaneous "yes" out of Nolan. It literally took months of modeling, practicing, and therapy to eliminate the echolalia and get the concept of "yes" into Nolan's head.

Here it is, in all its glory:



I never knew such a simple word could make me feel so happy!

In other news, we are heading up to Buffalo Hearing and Speech Center tomorrow for a third attempt at getting accurate hearing levels. Our audiologist called on Friday to cancel the appointment (we have had nearly every appointment since June cancelled or moved at the last minute- it's getting a little old). I told the staff I wanted to keep the appointment, so we're going to try the testing with a different audiologist. If we wait any longer, Nolan will have had the sleep study and ENT/GI doctor appointments and will be wary of the sound booth again. Plus, we have already arranged for Dennis's time off from work and for the prescription to get faxed up from the pediatrician's office.

Wish us luck- I hope Nolan cooperates this time around. Maybe a different audiologist will be a good thing, since he doesn't have as much familiarity with her. On the other hand, he could flip out and refuse to cooperate at all, which would mean that we have to schedule a fourth hearing test. Since I really hope to avoid that scenario, I am praying for a compliant and cooperative two year old tomorrow morning. Though I'm pretty sure that "two" and "cooperative" is an oxymoron, there's always hope that he'll be in good form tomorrow!

What We're Working On

Honestly, we could do with a little less snow

Nolan's speech continues to take off, with such spontaneous phrases as:

• "I don't want green sock. I want white sock!"
• "Matthew pushed me! No pushing, Matthew!"
• I don't want take nap."

We do have some minor articulation issues - he misses some sounds- hockey comes out as "hah-hee" and the word four comes out has "hor." He also confuses the B/M/N sounds on occasion ("I meed that" instead of "I need that," or "The moy did it" instead of "The boy did it"). These are really minor and his speech is intelligible for the most part, so we work on these sounds, but don't fret over any of it. It will come in time.

We are actively working on some language processing skills. Nolan struggles with echolalia (the fancy term used to describe parroting back what you just said) and auditory processing. It isn't a severe issue, but it is rather obvious during many exchanges.

An example of the echolalia would be this:

Question: "Nolan, where did you go today?"
Response: "No-wa, where go day?"

He will answer a simpler question, such as "what color is this flower?" because there is only one possible answer, and he doesn't have to think of what to say.

Another example of auditory processing issues is this:

"Nolan, do you want blue or yellow?"
"Yellow."
"Nolan, do you want yellow or blue?"
"Blue."
"Nolan, do you want blue or red?"
"Red."

Instead of thinking about what he wants, he simply mimics the last word uttered. Frankly, it's easier than thinking of both choices and then choosing the one he wants.

So we're working on the echolalia with a lot of modeling. This appears to be working in some ways, because we have gotten a spontaneous "yes" response twice this past week! It will be an ongoing exercise for us, as the more open-ended questions will take a bit more work.

To get Nolan to listen to a whole sentence and retain it (rather than just repeat the last word as his answer), we are giving him two choices, but with one choice far less desirable than the other. And the less desirable option comes last in the sentence. For example,

"Nolan, do you want to go sledding or go inside?"
"Nolan, do you want to play with playdough or do a puzzle?"
"Nolan, do you want juice or water?"

This is working very well. Often he'll stop, start to say "water," then look at me to repeat the sentence. This time he'll listen to the whole thing, retain both choices, and select the one he really wants.

Matt is still in speech therapy, though his speech has continued to progress to the point where the issues are more minor articulation concerns. There is a great likelihood that he will graduate from speech therapy this spring. We are currently working on "cluster reductions" (that's where he omits some sounds from the middle of a word- screwdriver would be pronounced as "'kew-dyer") and getting the /s/ sound in blends (snow is pronounced as "no" and "school" is "kool").

His preschool did a speech screening last month, and I am interested to see how he did with an independent Speech Language Pathologist. I wonder if he "passed" or "failed" the screening. He receives speech services through June no matter what, but we will have to have another IEP meeting next October to continue or stop his current services. He also starts the Universal Pre-Kindergarten program next year, so if he gets speech therapy, it will likely be during school.

In a Decade

Yes, I know the decade hasn't officially changed yet. Whatever. I'm going to do one of these posts anyway!

In the past ten years...

2000:

I was working for a little biotech company in Ventura, California called Biopool International. I was 22 years old. Manufacturing in-vitro diagnostic reagents for coagulation disorders, out of things most people wouldn't imagine (rabbit brains and snake venom, just for starters). Dennis and I were dating, having met at Biopool. I can't find pictures from this era, because we didn't have a digital camera. I'll have to get a scanner one of these days, to scan in the old film prints.

2001:

Dennis and I got engaged in February. Then married in November. We honeymooned in Kauai, which was absolutely beautiful. Biopool got bought out by an Irish company, and we were given notice that the company was shutting down. We paid exorbitant rent on a one-bedroom apartment. We saw several friends lose their jobs, and knew our own fate was sealed when the company was to be shut down the following year.

Our Wedding

2002:

We began the year by scouting out potential new careers, when the Irish company asked us to help move the product line to Ireland. Being young, with no property or children, we decided to go. We moved to Bray, Ireland in September 2002. There are a million stories to tell from that adventure. It was one of the best experiences of our lives.

Near Newgrange, in County Meath

2003:

We lived in Ireland. We went skiing in Sauze D'Oulx, Italy, went to London twice, and visited Paris, France. It was amazing. Absolutely amazing. Our contract in Ireland expired, and we were without jobs in September 2003. We moved back to California and lived with my in-laws, when the Irish company called and offered us jobs in Jamestown, New York. We took a quick trip, saw the housing prices, and decided to make the move. We left for Jamestown in early December 2003, for a five-day road trip (with two cats in the car).

Sauze D'Oulx, Italy

By Buckingham Palace

2004:

We bought our first house in April. We both worked, and decided to start trying for a family. Compared to previous years, it was rather sedate. I honestly don't think I have any pictures from this year (we still didn't own a digital camera).

2005:

In April, I found out we were expecting our first child. In May, Dennis found out he was accepted into the Executive MBA program at the University of Buffalo. He started school that fall, and Matthew was born that December.

Matthew, about 5 minutes old

2006:

Dennis continued his MBA program, and we were both working full time. Matthew went to a daycare in the city, and in December (on Matthew's first birthday), we found out we were expecting our second child. We also traveled to California in July to visit family, and had a wonderful trip.

In July, on the Santa Barbara Pier

Matt at his first birthday party

2007:

This was the most exhausting year for us. Dennis was still in MBA school. I was pregnant, working full time, and caring for Matt while Dennis traveled up to Buffalo for school every-other Friday and Saturday. Dennis traveled to China with his MBA program in the spring, and Matthew and I flew to California to visit family. Dennis graduated from MBA school in May. Nolan was born in late August, and while I was in the hospital, Dennis received a promotion. He also had to travel to Sweden, about 2 weeks out of every month. Nolan failed his newborn hearing screen three times, and we were told it was "just fluid." Thirteen days later, while Dennis was in Sweden, our baby failed his follow-up screen. We were referred to a Buffalo clinic for more testing, where a permanent mild/moderate hearing loss was confirmed. I was laid off from my job, a rather welcome occurrence at the time. We traveled to California for Christmas and Matthew's second birthday. We also went skiing in Brian Head, Utah, with Dennis's family on that trip.

Our family at Downtown Disney in California

2008:

In January, while Dennis was in Sweden, I went to Buffalo to pick up Nolan's hearing aids and learn how to care for them. We got to have an EKG, MRI, CT scan, genetics, and urinalyses done to verify there were no other problems at play with Nolan's hearing loss. We also had a set of PE tubes placed in May, then another set placed in December. Nolan lost 20dB of hearing in his higher frequencies in both ears, then recovered hearing in his left ear. His right ear never recovered, but is still in a good range. Matthew started a "Two-By-Two" preschool program. Both boys started our local early intervention program, with Matthew receiving speech services for an expressive language delay, and Nolan receiving speech services for his hearing loss.

We didn't take a vacation in 2008, but we did enjoy exploring places in our local area.

The family at Panama Rocks

2009:

Matthew started a three year old preschool program, Nolan started the "Two-By-Two" program, Dennis continued to work (though entirely within the country), and I enjoyed being the mom to two little boys. Nolan turned two, and at the end of the year, Matthew turned four. We traveled to California over Easter, and went to Disneyland, the beaches, the zoo, and spent an entire two weeks basking in the glorious sun.

Nolan struggled with weight gain, and was below the 3rd% for almost the entire year. As part of the investigation into his inability to gain wait, posterior urethral valves were discovered in March. Surgery was completed in June to eliminate the valves, which can pose a threat to bladder and kidney function. This was not the source of his weight issues, however, but an incidental finding. We were sent to a GI doctor in July to discuss the weight problems, and after performing a swallowing evaluation, scintiscan, upper GI barium X-ray, endoscopy and 24 hour pH probe we discovered he had mild delayed gastric emptying (gastroparesis) and severe gastro-esophageal reflux disease (GERD). After starting on DuoCal as a calorie supplement and Nexium, Nolan has started to gain weight and finally placed on the weight charts.

As the year wound down, the health issues seemed to settle and we were able to focus on spending time playing and having time together as a family.

Sledding on a local hill

2010:

We have an eventful year lined up. In January, Nolan has a sleep study to look for obstructive sleep apnea and a repeat hearing test lined up. We also get to take trips to the GI doctor and ENT. We plan on taking a little family trip in the spring, location undecided. Washington, D.C. and Boston are both top contenders, though! In July, the boys and I head out to Los Angeles, California, where Nolan and I will attend the John Tracy Clinic summer session. Matthew will start Universal Pre-Kindergarten and Nolan will transition to the school district under the Committee for Preschool Special Education system (CPSE). If we're really lucky, Matt will graduate from speech therapy. We plan on exploring and playing a lot this year!

Happy New Year, everyone!