Our Favorite (Dual Purpose) Toys

Christmas is over, and we are having a great time playing with the new toys and relaxing after all the business of the season. The boys loved all of their toys this year, and I especially loved the toys that are "dual purpose"- great for both play and therapy. While the boys inevitably play with each others' toys, I will separate the toys out by the child (and thus, age) they are intended for.

Here is my list of our favorite toys for Nolan (age 2):

• GloDoodle: A drawing toy, which has the obvious fine-motor and creativity benefits. I also use it for several language activities. With the GloDoodle turned off, I draw a picture and have Nolan guess what it might be. Then I turn it on and we can see if the guess was correct. It glows, so we can use it on night drives as an in-car entertainment toy, too.

• Blocks: We got a great set of unit blocks made by Melissa and Doug years ago. This year, we received the architectural blocks add-on set. Blocks might be the greatest language toy ever created. The great set of zoo Duplos we got also falls into this category- the language opportunities are simply endless.

• Doctor kit: The ability to role play and set up a pretend animal hospital has endless language opportunities. Hopefully, this will also help alleviate his anxiety about going to the ENT's office and our pediatrician's office.

• Shake and Go Race Cars: These cars are great. They're easy enough for Nolan to operate on his own, they go really fast, and are really fun. We can also count the number of shakes needed to make the car go, set up an obstacle course with our blocks, and race the cars side by side to get the concepts of "first, second, and third."

The best toys for Matthew (age 4) are:

• Automoblox: These things are simply great. We got a three-pack of the "Automoblox Minis." To be honest, Nolan plays with these as much as Matthew. They're great for fine motor skills, spatial relationships, and that unending need for boys to take things apart. Matt doesn't have a language delay (articulation issues only), but we never pass up the opportunity to discuss positional words and to emphasize the /s/ sound on "wheels." I love these things. Simply love them.

• Marble run: Another building toy- one that requires a lot of planning, fine motor, and spatial skills. As with any open ended building toy, there is a lot of talking going on while building the run. We pretend it is a roller coaster, we try to copy the patterns from the box, we come up with our own inventions. Nolan likes to drop the marbles in and watch them swirl around, but due to the obvious choking hazard, this toy is really designed for those in the 4-and-up category. We do get some frustration, as Nolan likes to play Godzilla and destroy Matt's intricate creations.

• Tag reader: Matthew received the Tag system made by Leapfrog for Christmas. I love it, and he loves it. The computer-pen can read individual words scanned, or can read the story page-by-page. The books have games, and the pen records the child's skill progression. Currently, the books have placed Matt into the kindergarten (for reading) and first grade (for vocabulary) levels. There is an associated website that tracks your child's "learning path"- currently Matt's' vocab is off the charts (perfect scores on the games) and his decoding skills need a little work (considering that he just turned four last week, I'm not surprised). The only difficulty with this system is keeping Nolan's hands off of it. He's quite interested in it, but the system is really meant for the 4-8 year old set (meaning that 2 year olds won't quite "get it"). There is a Tag Junior system out there, but we figured we'd just wait another year and get Nolan the regular Tag system when he's old enough for it.

A Public Service Announcement from Matthew

The Not-A-Hearing-Test Event

We got the kids bundled up and headed out to Buffalo Hearing and Speech Center, for a repeat hearing test. With the wax clear, we wanted to finally get a complete audiogram and confirm that Nolan's hearing levels have returned to their June 2009 levels.

This sounds like a good plan, but when the critical player is a two-and-a-half year old boy, the following scenario ensues:

"Nolan, point to the baseball."

Nolan points to the baseball (so far, so good)!

"Nolan, point to the ice cream."

Nolan throws a peg across the room.

"Nolan, point to the popcorn."

Nolan crawls under the table and pretends to take a nap.

Oh, goodness. I tried giving him a couple of raisins to get him back on track, but then he simply wanted to eat more raisins, or crawl on my lap, or do anything but point to flashcards.

We tried to shift over to getting some pure-tone results for his audiogram, and he could have cared less about the lit-up koala in the box. Normally, he loves those puppets. Yesterday afternoon, he wouldn't condition to looking at them at all. He stared at his hands, dropped toys on the floor, and became "noodle boy," where his limbs flailed around and he sank to the floor in a most dramatic way.

We get to come back on January 12 and try this again. Sounds like fun!

We are going to modify a few things on this next try. We are going to do the test at 10:00am rather than in the afternoon, to see if that improves his attention span. We're also going to do the test sans Mommy. The hope is that without my presence, Nolan will focus and listen to the audiologists a bit better. Our ENT really wants a full audiogram, so hopefully we'll be able to get one.

We were able to determine that his speech reception thresholds (SRT) were 45dB for both the right and left ear. This is good for the right ear, because that is only 5dB away from his June 2009 level (within test-to-test variability). So the loss in that ear was probably from the wax and nothing more. The left ear, however, used to have an SRT of 30dB, so this is a 15dB drop. With Nolan's lack of cooperation, we can't tell if it is a "real" drop or not. Without the pure-tone results, we don't really know what is going on with the little guy. His tympanogram also looked good: the right ear had a "Type A" and the left ear shows an open perforation (the hole from the PE tube hasn't sealed up yet).

Wish us luck for the January 12 repeat!

The Importance of the Middle Ear

We go to Buffalo tomorrow for Nolan's repeat hearing test. Hopefully the most recent loss of hearing was due to the wax in his ears. Kids with hearing aids for a sensorineural loss rely on a healthy middle ear to maintain reasonable aided hearing levels. Nolan has a relatively mild loss, but middle ear problems can cause his hearing to drop into the severe range across all frequencies. This is the primary reason our ENT wants to get those adenoids and tonsils out.

With every hearing test, our audiologist runs a tympanogram. This measures the mobility of the eardrum and can give an indicator of middle ear health. A nice, healthy middle ear gives a "Type A" tympanogram, with a nice peak to indicate the eardrum is functioning properly. I actually only have one tympanogram with this configuration- this example is from Nolan's right ear during a relatively fluid-free period of time. This was also shortly after his second PE tube fell out of the right ear.

Nolan's right ear: possibly the only normal tymp. he's had.

The second type of Tympanogram is a "Type B," and is flat. This can mean fluid, or a perforation. When Nolan's right ear dropped to a hearing level of 80dB in December 2008, his tympanogram looked like this:

Type B tympanogram in a very fluid filled ear

You can't see a peak, and the line is very flat. With no PE tube in place, this was bad news. This is what earned Nolan his second set of Pressure Equalization (PE) tubes.

Not all "Type B" tympanograms are bad. Nolan's healthy left ear always displays a "Type B" tympanogram, because it has an intact PE tube. A child with a PE tube will display a flat tymp. with a large Ear Volume. The volume lets us know that the tube is in place and functioning as it should. The tympanogram is a good way of checking up on the status of his tubes:

Type B tympanogram with a patent PE tube.

There is also a "Type C" tympanogram, which is what Nolan's right ear is currently displaying. This means there is negative pressure in the middle ear space, causing the eardrum to retract. I don't have a picture of this tympanogram, because it was done as a quick check-up at our most recent ENT appointment. Type C tympanograms can be caused by congestion, and sometimes mean the middle ear space will soon fill with fluid.

Hopefully our hearing test tomorrow will show a return to our June 2009 hearing levels. If we see a decline in hearing ability, a tympanogram will be run again to verify a healthy middle ear.

I have my fingers crossed for good hearing levels and a nice "Type A" tympanogram!

Buffalo: Round 2 (GI)

Completely unrelated to the post- just a gratuitous Nolan-cat picture

We went to the GI doctor today and took their scale for a spin- Nolan weighs a little heavier on the GI doc's scale, placing him on the charts! A heavily full diaper and thick, heavy clothes definitely make those weight numbers increase. The DuoCal is obviously doing its job, even if Nolan is back to eating almost no solid food. The GI doc agrees with our ENT that the reflux symptoms are definitely making a comeback, so she increased his Nexium to twice per day (still at the 10mg dosage). We get to go through the insurance battle all over again to get the dosage increased, of course.

Otherwise, he's looking good from a GI point of view. She wants to see him in two months to make sure the increase in medication level is helping. She also thought that his tonsils might be inflamed from a viral illness rather than reflux (I tend to agree, since he had a cold a few weeks ago). I mentioned the sleep study and she thought that was a good idea. I told her I wanted to avoid a tonsillectomy, but she said that a tonsillectomy/adenoidectomy might really help with the fluid-in-the-ears problem that Nolan frequently has. I was a little disheartened by this- I was kind of hoping she would say, "Oh, he's gaining weight and just fine! Don't worry about the tonsillectomy."

We'll take it as it comes- the sleep study will help make the decision for us. If Nolan's tonsils shrink back down in two months, we can nix the idea altogether. If everyone could send "shrinking tonsil" thoughts this way, I'd be much obliged.

The best news was when she whispered "Hey, have they gotten the H1N1 vaccine yet?" I told her that no, there was no supply in Jamestown.

Assuming the voice of what I would guess a crack dealer might sound like, she said, "I've got some vaccine. Quick, into the back office."

There is NO vaccine in the entire Jamestown area, and it is highly rationed. Being an immunologist as well as a GI doc, she just received a supply of 600 vaccine vials. This means that not only did both of my boys get the vaccine, but they will manage to get TWO doses of the vaccine. For fully effective immunity to H1N1, you need both shots- most people are only getting one. We see her in two months for a weight check and a check-up on Nolan's reflux symptoms, so we'll receive the second dose at that appointment.

The best news is that there will be no further trips to Buffalo this week. The next trip will take place on the 15th, for Nolan's repeat hearing test. Considering the huge lake effect storm set to hit us tomorrow, I am rather glad to stay at home!

Buffalo: Round 1 (ENT)

We headed up to the ENT this afternoon to determine if there was any fluid lurking behind the wax in Nolan's ears. With a flat tympanogram in the right ear, we thought some hidden fluid might be the culprit behind the latest loss of hearing.

The ENT looked in his ears, weighed him, and then took him back to clean out the wax. This is a very miserable process, involving a papoose board, a microscope, metal instruments, and some bleeding from Nolan's ears. I won't go into detail, but let's just say that it ranks pretty high on the "least favorite thing to do" list. His left PE tube had just fallen out of the eardrum, so she removed that, too.

His ears are clear, and there is no fluid. We're free to go to BHSC for the repeat hearing test on the 15th, confident that there is no cause for a conductive problem remaining in his ears. They did run a tympanogram, which showed a perforation in the left eardrum (from the recently removed PE tube- it is too small to see and should heal completely by the time of the hearing test). The right ear does show negative pressure, but they just "wait and watch" with negative pressure. Sometimes it means a fluid build-up is imminent, sometimes it just disappears on its own.

Of course, no ENT visit is complete without finding some new thing to be concerned about. Our ENT is concerned that Nolan's anti-reflux medication isn't quite handling his reflux. He's eating less, pulling at his neck more, screaming a lot. Also, he never sleeps (reflux parents, you know what I'm talking about). He's also snoring again and his tonsils are big.

The big tonsils and reflux/snoring issues worry our ENT a bit, because all of this can affect growth. We have managed to get his weight back to 24 pounds, 3 ounces with a lot of DuoCal, but we're not seeing an improvement of symptoms. Our ENT has ordered a sleep study to be done on Nolan, and if obstructive sleep apnea is found, a tonsillectomy and adenoidectomy will be recommended. I get to set up the "polysomnogram*" at my convenience, and we'll see the ENT again on March 1 for a follow-up. If his tonsils have decreased in size and his sleep study looks good, we can ditch the whole tonsillectomy idea. I really want to ditch the whole tonsillectomy idea.

She also sent a note to our GI doctor requesting a possible increase in anti-reflux medication. We see our GI doctor tomorrow, so this may happen fairly quickly. Now I'm preparing for Buffalo: Round 2 (GI). Time to charge that portable DVD player!

*I learned a new word today.

An Open Letter to My Two Year Old

My dear, sweet Nolan,

While jumping down the stairs is entertaining to you, it is giving your mother a heart attack. Please hold onto the handrail and walk down the stairs from now on.

Also, while it sounds like the word "toy" is in toilet, I assure you this object is not meant to be played with. Trust me on this one.

The cat doesn't like playing "dinosaur chase." His tail is also not a handle. And no, the cat doesn't really want to eat your applesauce.

And, my dear boy, these precious little objects are not Legos:


And could you please tell Mommy where the other hearing aid went? Please?

Love,

Mommy

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!

Of Long Car Rides and Earmolds

Nolan would much rather fly to Buffalo.

We drove up to Buffalo to make impressions for new earmolds yesterday. The actual appointment was quite uneventful, with the standard pink goo and disassembling of every puzzle in our audiologist's office. The car ride to and from Buffalo, however, was interminable.

For those of you who are not "lucky" enough to experience a long car ride with Nolan, I will recap the event:

• *drops juice cup* "MY JUICE! I WANT MY JUICE! JUIIIIIIICCCCCEEEE!"- 25 minutes.
• *takes off one shoe* "MY SHOE!!! MY SHOEE! SHOOOOOOOEEEEEE!"-20 minutes
• *observes Matthew sleeping* "MATTHEW! WAKE UP! WAKE UP! WAKE UP!- 10 minutes.

At this point, I can't take any more crying (because all statements in the car must be made at maximum volume, in a sobbing voice). I told him to please use his talking voice, and not his crying voice. So, for the remaining hour, this is what I heard:

"I'M TALKING TO YOU, MOM! I'M TALKING TO YOU! TALKING! TALKING TO YOUUUU! I'M TALKING! TO YOU!"

His pronunciation might have made it cute, in that he sounds Italian: "I'm a-talkin' a you, Ma!" The volume, however, negated any "cute" effect.

The ride home was quite similar, except he didn't have his hearing aids in, so he was slightly louder.

The good news was that he finally fell asleep. The bad news was that he fell asleep three minutes from our house.

Thank goodness our audiologist loves us and booked our next hearing test for the earmold pickup, so we can reduce the total number of trips!

Hard of Hearing Moments

Now that Nolan's language has developed to a level where he can really communicate his thoughts and ideas, we are starting to notice the words he doesn't quite hear correctly. This can lead to some rather confusing exchanges!

We were at the Strong Museum in Rochester, and told Nolan that we were going to make a cape at the Superhero station. We went and started to decorate the cape, adding ribbon and his superhero name, "No-Man." All the while, Nolan was getting more and more frustrated. Soon the tears erupted, and I asked him what was wrong.

Nolan cried out, "Where my CAKE?"

The poor little guy thought we were taking him to make a cake, and not a cape. I tried to explain, but he couldn't hear the difference between caKe and caPe, so I finally signed "not cake." I had no idea what the sign for "cape" was, so I pantomimed putting a cape on. He finally understood and was more than happy with his cape. This was definitely an instance when signing came in handy, as the word "cape" was unfamiliar and he just couldn't hear well with the enormous amount of background noise.

It might not be cake, but he ended up liking it anyway.

We had another little moment today, when our speech therapist was working with him. She is working on getting him to identify objects by function, and had several pictures of body parts in front of her. She asked him what we use to see, then helped him select the eyes (he can't do this on his own yet- it is a skill for an older age set). Then she asked him, "Nolan, what do you comb?"

Nolan looked at her, thought for a minute, then shouted, "ICE CREAM!"

We were a little confused, then realized he was confusing "comb" for "cone." Darn those low frequency consonants!

At moments like these, I think a system like Cued Speech could be very useful for helping the little guys to discriminate words with similar sounds! For now, we're just emphasizing the sounds or sometimes using the sign to help him understand what we are saying. Hopefully he'll learn to discriminate those tricky words with practice!

Random Update

We've had a good week with the grandparents visiting from California, our first snow of the year, and visits to the Strong Museum of Play and Brown's Berry Patch. We've noticed a change in Nolan's language, which is getting more complex by the minute. Recent sentences include:

• "I don't know where Matthew is!"
• "My not a baby. My a big boy. Matthew baby!"*
• "I got my Grandad!"
• "My a frog. RIBBIT RIBBIT!"

The first sentence blew me away. It was completely spontaneous, and included all the appropriate parts of speech. Also, it was six words long.

He's also been responding better to sound, which is a big relief. We had about a month of poor response, which occurred with a cold. We know that Nolan's hearing level drops to about 80dB in the presence of fluid, so it is a big relief to see his behavior returning to "normal." He's turning to his name again, and even seems to be doing well in the presence of background noise. He turned when his name was called at preschool (the voice was behind him), and responded to Daddy's voice at the very hectic "Zoo Boo" event we went to last night.



The Nexium seems to be working well, and Nolan has been eating a good amount this week. He still isn't sleeping through the night, but our recent discovery that apple juice is on the "no-no" list may help matters a little.

It is nice and uneventful around here- just the way I like it! The only upcoming appointment is for earmold impressions on the 30th and then a well-baby checkup (2 year) in November. I love it when everything goes along so smoothly!



*Matthew heartily disagrees with this statement, and has indicated on numerous occasions that he is a big boy. This is a common point of contention between the two boys!

July 2010

About two weeks ago, I submitted our application to the John Tracy Clinic International Summer Session. Last night, I received the email stating Nolan has been accepted for the July 11-30 session in Los Angeles, California.

The John Tracy Clinic has been a tremendous source of support, encouragement, and education for our family- from the early days when we were struggling to know what Nolan's level of hearing loss "meant" to these beginning preschool years, when we are struggling with discipline, learning special education laws, and other things that come with having a hard of hearing two year old.

For those who are not aware of the John Tracy Clinic, it provides free resources for the parents of deaf and hard of hearing children. They have a correspondence course for babies, and another for preschoolers. If you have a baby or young child recently diagnosed with hearing loss, I highly recommend their program.

The summer session includes audiology services, various language assessment tests, a preschool program for the children, and classes on everything from speech development to ear anatomy for the parents. Marielle, Logan, Tayten, and Miss Kat have been through the John Tracy Summer Course, and have excellent write-ups about the experience.

We will be staying in the on-campus apartments at USC, and will walk to and from John Tracy. Since we have family in Southern California, the grandparents have quite nicely decided to take care of Matthew while Nolan and I are at school. Matt is in for the time of his life, with trips to Disneyland, the Sequoias, and other trips in the planning stage. Nolan and I won't be left out of the fun, as a trip to San Diego and a few other mini-trips are in the planning stages for the weekends.

I am also thrilled that Lucas and Noah will be attending the same summer session program. I can't wait for July to come so that we can hop on that plane and start our learning adventure!

Speech Sample: 25 Months

Nolan is obsessed with the Pixar movie Cars, so when Grandma sent a sticker book with the characters, he was absolutely thrilled! I figured I would snag a speech sample while he was so enthralled. I have noticed his "hearing bubble" seems to be smaller these days- he has had a cold recently so I am not sure if the fluid is causing trouble or if there is something more permanent going on. He's dropped his final /r/ sound (car used to be "tar" and is now closer to "tie"), initial /p/ sound, and is confusing words like "police" and "green." I'm voting for fluid troubles- hopefully it will clear out soon!

Solutions

Nolan has recently started listening to videos and cartoons. He used to watch television without paying attention to the sound. I know this because he used to sit on the couch, happily watching the visual feast on the screen- the volume set at a point where he couldn't hear it at all, but where Matt could hear it just fine.

Recently, Nolan has taken to standing right in front of the screen, which infuriates his brother. This is a great sign, because it means Nolan now wants to hear what is going on. He wants to hear the dialog, the music... he wants to get the story behind the pictures. Unfortunately, Matt can hear the TV just fine from the couch and Nolan's head makes a better door than a window.

To head off the TV Wars, I brought Nolan's rocking chair downstairs and set it in front of the TV. Now he can hear Cars and his brother can see it. As Nolan gets older, we may have to think about getting some sort of a loop system for the television. For now, though, the front row seat works just fine.

First Day of School

Nolan had his first day of preschool today. The first day that I would give him a hug and say, "I'll be back soon!" and leave the classroom. I was worried about separation anxiety. I was worried about communication issues. I was worried about other children potentially pulling on his hearing aids.

For all my worries, the day went so smoothly, there isn't really anything to write about. The other kids weren't interested in his aids at all. Separation went like this:

Me: I'll see you later, Nolan!
Nolan: See later, Mom!

No tears, no angst, not even a pouty little lip. Just a happy little boy who was baking a pretend cake with his teacher.

His hearing in noise is questionable at best, but the teachers are so caring and do everything they can to minimize background noise. Nolan's articulation differences are apparent sometimes, as he tends to have some distorted vowels and strange consonants- the other kids shouted out "COW!" during story time and Nolan shouted out "Dah!" (his word for cow). For the most part, however, he fit right into the class.

When I picked him up, he was eating goldfish crackers and a pretzel. Mouth full of gummy food, he offered me one, "Here go, Mom."

Today was an absolute success. I am thrilled that he is not the youngest in the class, and that the staff (I think there were about 5 staff members in the room) was so caring and helpful with my little boy. I absolutely love this program and I can see Nolan growing in many ways through this next year!

Falling Into New Vocabulary

Autumn is my favorite time of year. With Nolan picking up new phrases left and right (newest: "can't catch me!" to his brother) we are really enjoying the new language opportunities the seasonal change is bringing. New words for this week include:

Crunch
Colorful
Pumpkin
Squash
Cinnamon
Crisp
Turkey (we get them in our backyard this time of year)
Scarecrow
Chilly
Acorn
Rake
Pile

We are going to collect leaves to send to Grandma's preschool class in California (which sadly, lacks the colorful leaf change we see in our region). We are taking walks and admiring the goldenrod and asters in bloom. We are watching spiders spin their webs and butterflies sunning themselves at noon. We're also baking apple pies and pumpkin bread, which isn't so good for my waistline!

Nolanisms

Our future soccer star

Like all two year olds, Nolan has several words that don't sound exactly "right." These toddler words are so darned cute, and I'm going to miss them when they're gone! My favorite Nolanisms:

• Bape (grapes)
  
• Bider (diaper)
  
• Boppy (coffee)
  
• Bet-bet (blanket)
• Tut (truck)
• Mittey Mout (Mickey Mouse)

I know that "Want bape, Mom!" and "Want bet-bet and rock, Mom" are not long for this world, with all the speech therapy he gets and the rate his language is exploding. We are also making headway in other language skills.

Nolan hasn't used the concept or word of "yes" yet. He hasn't even nodded to indicate he would like something. After some games with our speech therapist, he is now (with prompts) using the word yes. It goes something like this:

"Nolan, do you want more bubbles?"

Nolan: "Want more bubbles."

Speech therapist: Nods head vigorously.

Nolan: Also nods head vigorously.

Speech therapist (still nodding), "Yes, I want more bubbles!"

Nolan: "Want more bubbles- yes!"

The good news is that the nodding prompt is now working to elicit the "yes" response (though he doesn't use it spontaneously). The bad news is that we are all going to need dramamine from the motion sickness induced by all that nodding!


Since I'm in brag mode, other new Nolan phrases are:

"Be right back, Mom!"
"Come on!"
"Want watch moodie (movie)."
"Don't kiss my head!"

There seems to be another language explosion around the age of two, and it is a big one. We have heard a six word sentence recently (though the more typical length is 3-4 words). If he continues at this rate, he may be orating speeches by the end of this year!

Gearing Up for Preschool

I can't believe summer is over, my tiny newborn is two years old, and preschool starts this coming week. Many families agonize over the type of preschool their deaf or hard of hearing child will attend. We don't have that worry, because we don't have many options. In our area, there are no oral deaf schools, no cued speech schools, and no bilingual ASL/English schools. There are three mainstream preschools in our area, and only one has a program for two year olds.

So for two hours on Thursdays, Nolan will be attending First Covenant's "Two By Two" program. I did this program with Matthew, and it is a wonderful program specifically geared to two year olds. As a side benefit, the parents get to go upstairs and have a snack and coffee during the program time (adult conversation is a very big thing in my world).


While I have done this program with Matt, this time it is different. For one thing, Nolan is my baby. My sweet, cuddly, still-missing-eight-of-his-baby-teeth baby. He's also small. Those jeans falling off his waist in the photo above? Size 12 months. The ten month old at today's softball game was the same size as my two year old, so his size makes me a little more protective. Maybe it shouldn't, but it does- he gets knocked over easily and isn't as "sturdy" as a lot of the other two year olds in his class will be.

And then I worry about how well he will hear in his classroom, with 11 other children, tile floors, and poor acoustics. No TOD, no FM System, and no one trained in educating or working with a child who may not hear them well at all with all the background noise.

I worry that the other parents will judge the whole potty training issue, which we haven't started because of some physical issues related to Nolan's PUV's. I dread the talk of toilet training and how everyone else has a great method that works lickety-split.

I worry that he will spit out his food at snack time, or spit up. Or choke and gag, as he sometimes does. That he will start one of his crying jags, which we now know is caused by a reflux event. I worry that the other teachers won't "get" that his eating issues and behaviors are related to a medical problem.

Some people have told me that Nolan starting preschool is no different than when Matt started preschool. But it is entirely different. On-a-another-planet-different. I'm not worried about him learning his colors and shapes, as he already knows these. Hey, he even knows many of his letters and that his name starts with an "N." No, I am worried about him, as a person. Will he socialize well with the other kids? Will he separate from me easily, or has he been scarred from so many medical issues in the past few months? Will he panic? Being the smallest one in the class, will he be babied too much?

We have an "orientation day" and I am going to meet with the preschool director (who personally teaches the Two-By-Two class) to discuss all of my worries. To show her his audiogram and explain that yes, he talks very well. But he doesn't have the concept of "yes," he doesn't answer questions without help, and he might not be "getting" what you have told him, even if he follows along with the other kids.

That first day is going to be harder on Mommy than it is on Nolan. I know, deep down, that he'll be just fine. The first few weeks might be rough, but he'll find his wings, dip them in finger paint, and get messy and be happy with the other kids.

Earrings

Nolan has taken a keen interest in other people's ears lately. We were sitting on the floor during speech therapy, and he noticed our speech therapist's earrings.

"That Cyndi earring."

She acknowledged his statement and talked about her earrings a little.

"That Mommy earring!"

I told him that I was, indeed, wearing earrings.

"That Nolan's earring!"

And so our hearing aids have earned a new moniker. They are Nolan's earrings, and he's mighty proud of them!

Approved

The medical office for Dr. Wonderful called yesterday and delivered the great news that they had prevailed over the insurance company. I was surprised it had gone through so quickly and easily, and Dr. Wonderful's medical front office person chuckled and said she had found a lovely loophole. The medication was approved not because our doctor thought it was the best medication for Nolan, but because of some quick thinking on the part of our doctor's medical office personnel.

The story, as related to me, went something like this:

I dropped off the prescription, and our pharmacist called to get insurance approval. The insurance denied the claim, and forwarded the information to Dr. Wonderful's office. Dr. Wonderful's office then sent the information back that the medication was urgent and the child in question needed approval quickly due to the severity of the case. Again, a big red DENIAL. So Dr. Wonderful's office decided to save the big battle for Wednesday, when there would be no one around. Just in case things started to get a little "loud."

She called and restated the information, that this child needed this medication. And he needed it quickly. The insurance company's response?

"Absolutely not."

She lobbied again and again, to no avail. They insisted Nolan take the cheaper drug, even though it was not recommended by our doctor. They would not approve Nolan to take Nexium until he had tried Prilosec and it had failed to work.

Then Dr. Wonderful's office noticed something. The Prilosec the insurance was willing to pay for was not only less effective for our little guy, it was also a PILL. Giddy with her plan, the office called the insurance person back.

"The medication you will approve for this child is a pill. He can't take a pill."

"He can take a pill. We are approving the pill."

"He's two. He can't swallow a pill."

"Why can't he swallow a pill?"

"He's TWO. YEARS. OLD."

"And how does that make him unable to swallow a pill?"

"It's a choking hazard!"

Silence.

More silence.

"The Nexium is approved."

So, on the basis that Nolan might choke to death on the cheaper drug and therefore cost the insurance company even more money than the cost of the Nexium, we have approval.

The kicker is the phone call I received about 10 minutes after I hung up with Dr. Wonderful's office.

*ring*

"Hello?"

"This is XXX Insurance Company, and I'm happy to let you know your son's medication has been approved without delay!"

Yeah, right, buster! I know the whole story. And I also notice that you never call when you're denying things, only when you have finally succumbed to approving something after a fight.

At least we have Nolan's medication approved for the next year, no matter what hassles we have to go through to get it!

On Nexium and Symptoms of Silent Reflux

Nolan, tugging at his neck. Nexium: Day 2

We are in "round one" of our battle to get Nolan's insurance company to approve his Nexium medication. I dropped off the prescription yesterday, and the pharmacist does not have any in stock. He said he won't order it until he gets approval from the insurance company, which is likely to deny the medication.

Our GI doctor feels that due to the severity of Nolan's reflux, Nexium is the best medication for him. Our insurance company feels a cheaper drug is the best for Nolan. Because a stuffed shirt in an insurance building knows more about my son's health than his doctor. But I digress...

The Nexium is a powder, which is mixed into a tablespoon of water. Nolan can't eat before it is given, and can't eat or drink anything for 30 minutes after taking the medication. Oh, and it tastes TERRIBLE. Since I can't mix it into applesauce or give him a drink to wash the taste out of his mouth, giving him the medication is quite the experience. And by experience, I mean "sit on your child and force 20mL of nastiness into his sputtering self while he spits as much of it back onto your face as he can." I'm guessing he's only getting about half the required dose, since he blocks the medication with his tongue and spits much of it out again. Mommies who have to dose your kid with disgusting medication that can't be masked, what do you do? I know there has to be at least someone with good advice out there!

I also thought I'd post about the symptoms of silent reflux. Now that we know what Nolan has, a lot of the strange things he does make sense. So, a rundown of his symptoms:

• Occasional random coughing and watering eyes. This is due to acid coming all the way up and getting into his lungs.
• Tugging at his neck. He does this quite a lot. This is because it hurts.
• Refusing food. Again, because it hurts.
• Craving liquid. This is because his throat hurts AND he's hungry.
  
• Night waking. He refluxes, he wakes up. We thought it was just a random toddler thing.

Non-silent reflux (would that be LOUD reflux?) shows up by vomiting more than twice per week. Nolan, as a rule, hasn't been big on the vomiting. He did it every day for a week in April, and again a week ago. Other than that, no puke. He does spit up every once in a while (about 2x per month), but not enough to scream "reflux kid!"

I'm off to call the pharmacy to see what phone calls I need to make today. If I'm lucky, we'll get approval before my sample packets run out.

So THAT'S Why He Won't Eat!

We saw Dr. Wonderful (the GI doctor) today and were prepared for her to say that they couldn’t find anything. That Nolan’s disinterest in food was due to behavioral reasons and that we were going to have to go and see a kiddie psychologist and visit the feeding clinic. After all, his scintiscan was normal (minus some mild gastroparesis), his upper GI barium study was normal, and his upper endoscopy showed a visually normal esophagus (minus some minor irritation).

So we walk into her office, and she pulls out his file. Within 2 minutes, we knew why Nolan isn’t eating. She pulled out his pH probe study and said, “he failed, and he failed badly.” He’s been diagnosed with severe GERD, with an atypical presentation. Oddly enough, the first person to think that this was the problem was the speech therapist who did his feeding eval- she told us that he looked just like a “GERD kid.” So anyway, for those who want technical details, here are some numbers:

In a 24 hour period, Nolan refluxed 86 times. EIGHTY SIX. No wonder the kid hurts! Sixteen of those episodes were longer than five minutes in duration. OUCH.

The longest reflux period was 18.9 minutes when he was upright, and 36.3 minutes while he was laying down. That’s a long time to have acid in your throat.

The lowest pH reached was 1.2- pure acid.

He refluxes when he eats, he refluxes when he doesn’t eat. But he refluxes the most while he is up and moving, and not when he’s sleeping. This is why the scintiscan didn’t pick up on the reflux- that scan is performed with the child flat on his back. They do it that way because almost all kids reflux much worse when laying down- not our Nolan! Nope, he refluxes the worst when he’s running around, playing, and eating.

Nolan’s total amount of time spent in reflux was 25.4%. For comparison, normal children don’t exceed 4%.

They have a scoring tool called the DeMeester score- the top of the normal range is 14.72. Nolan’s score is 72.57

In other words, Nolan is refluxing, and refluxing BADLY. This is why he grabs his throat. This is why he avoids solid food. This is why he cries for milk and juice all day long, why he won’t gain weight, and why he fell off the scale upon starting solid foods (when he was nursing, lying down, he didn’t have too many problems). When he started eating upright, he started refluxing (this is the opposite of what most children experience, but if something is rare, Nolan is bound to have it).

The next step is starting a special formula of Nexium for children. Hopefully our insurance company will cover it- the “preferred” medication is Prilosec, but it isn’t as effective with severe GERD. We will keep up with the DuoCal and we should see some fast results. We do not need to go to the feeding clinic because Nolan’s issues are 100% medical. We go back to the GI doc in 3 months for a weight check and to make sure he’s doing well on the Nexium.

He should start to eat much better now that it doesn’t feel like battery acid is being poured down his throat every time he tries to eat. I’m a happy mama that we got this figured out so that we can help the little guy!


He also has a special GERD diet to follow. Some things will have to be eliminated from his diet: ketchup, tomato sauce, salsa, chocolate chip cookies (any chocolate, for that matter), citrus fruits, and a host of other foods from a long, long list. That Easter ham is not gonna fly this year! He can have most fruits and vegetables, breads, dairy, and lean meats. Luckily our diet consists primarily of these foods anyway, so we don't have too many adjustments to make- losing the spaghetti sauce and all tomato products will be the hardest, but we'll find good substitutes!

Two

Time goes by very quickly. Too quickly. My baby has turned into a vibrant two year old in love with balloons, Lightning McQueen, and puppies. And so we celebrated his birthday, with balloons and Lightning McQueen. There were, however, no puppies.

Happy birthday, baby boy.

Small Steps

Nolan's receptive and expressive language is quite good. Not "good for a hard of hearing child," but simply good- for any child. He regularly puts together 3 and 4 word sentences, has far too many words to count, communicates his wants and needs (LOUDLY) and is able to follow 2 step directions.

We do have some concerns with his grammar and his verbal processing, though this may be due to age more than hearing status. Still, because he is at continual risk for language problems, I think we will definitely mention these problems in his IFSP goals this fall.

We have found a way to work with his ability to answer questions. Since Nolan will mimic the question rather than formulate an answer, our speech therapist has devised the following technique: Ask, Model, Ask (wait).

First, she asks the question, "Nolan, what is this?"

Nolan will invariably repeat, "Noh*, what is this?"

Then she'll model the answer by asking me the question:

"Mommy, what is this?"

"That is a frog!" I enthusiastically answer.

Then she asks Nolan again: "Nolan, what is this?"

He'll repeat, "Noh, what is this?"

Then comes the waiting. Instead of answering the question for him or accepting his repeated question, we simply look at him and wait. Finally, after much pause, comes the answer:

"Pwog!"

Then there is much clapping and cheering and running around in circles (Nolan's personal expression of "happy"). This process works about 25% of the time right now, so we're keeping it up and hopefully the success rate will increase with time.

His other "issue" is not uncommon for children his age. He gets his grammar backwards- instead of saying, "the bear has a ball," he'll say, "ball has a bear." Or he'll say, "Work at daddy" to mean "Daddy is at work." Right now I am simply repeating what he says, but in the correct order. If he says, "Asleep a Matt," I'll say, "Matt is asleep! Maybe he will wake up soon."

Otherwise, he continues to astound and amaze us with things we didn't know he could do. Our speech therapist told him to put a green circle on blue square, and he was a bit flummoxed. She backed the complexity of the request down a notch, and asked him to put the yellow triangle on the yellow circle. His little hand reached out and accomplished the task without hesitation. He managed to handle two shapes and one color in his auditory memory, and get them in the right order. WOW! Not bad for a kid who still hasn't turned two!

The "eating thing" is still plaguing us. His appetite varies greatly from day to day, so we never know if it will be a good eating day or a poor eating day. This morning he woke up and threw up until noon. He doesn't appear to be sick (slight temperature, but Nolan nearly always has a slight temperature). It is very similar to what he did in April, when he quit eating well. It is definitely something we will keep an eye on. He has his follow-up GI appointment on the 31st of August, and we will get our assignment to the feeding clinic at Buffalo Children's at that time. I've heard they can do wonders, so if there is no medical cause, we should be in good hands.

*Noh is what Nolan calls himself. Silly parents for giving him a name filled with low frequency sounds!

Like Camping, Minus the Fun

We headed up to Mercy Hospital in Buffalo for Nolan's endoscopy and 24 hour pH probe study. Since he is rather young and likely to rip the pH probe out of his nose, he would have to stay overnight for monitoring.

We left our house at 5:00am to be there in time for check-in, and then proceded to the pediatrics floor. I was concerned about being in a "grown-up's" hospital, but this really ended up working to our advantage. The pediatric unit only has 12 beds, and most of those were empty. This meant the nursing staff was very eager to take care of Nolan, who charmed them with his antics.

I was confident that the DuoCal was working, because we've been adding it to all his food/drinks and it had to be adding at least 200 calories per day to his diet. Plus, he's been eating better lately. They put him on the scale as part of the check-in process. He was last weighed about a month ago and was 23 pounds, so I was pretty sure we'd see a number like 24 pounds pop up on the scale.

Nineteen and a half pounds.

The boy weighs NINETEEN pounds. How in the world does that happen? Essentially, he's gained almost no weight in a year. I do have a hard time believing that he's lost four pounds in the past month. Perhaps the scale in the hospital was a tad "off," but I also have a hard time believing that it is off by four full pounds. So he's definitely lost some weight, despite the DuoCal and eating better. I can't explain the level of anxiety this causes: how can a child eat more and weigh less? We'll go back to the GI doc in a couple of weeks and weigh him on the same scale as his first appointment, and maybe he'll come up a little heavier. I can only hope.

Nolan and I were taken down to the surgical waiting area, and our GI Doc and the anesthesiologist came in. My hopes for a doctor who could come up with a comprehensive diagnosis were dashed when the GI doc asked, "now what are those in his ears? Earplugs?" She didn't remember who he was, and didn't know that he wore hearing aids. I gave a brief recount of his history to the anesthesiologist, then they took him back for the procedure.

A short time later, we were retrieved and shown pictures of Nolan's digestive tract. Everything looks pretty normal, except for some very minor irritation on his esophagus. There is nothing that can visually explain why he pulls at his neck, often refuses food, and fails to gain weight. Don't get me wrong- I'm happy that there is nothing obviously wrong, but how do you "fix" something that has no cause?

We are to make a follow-up appointment in two weeks, and if all of his labs come back normal and and his pH probe is normal, then we will start at the behavioral feeding clinic in the hopes that some occupational therapy will get him to eat more. Though I'm rather stressed, since he has been eating more, and simply lost weight in the process. My mind boggles.

Anyhow, he came out of the procedure in a quite chipper mood. He was lying in his little crib and asking, "Mommy go?" to the nurses. They gave him to me and disconnected his IV. The pH probe was taped to his face, and he had "no-no's" on his arms. They had also placed socks over his hands, since Nolan appears to be able to bend the laws of physics and can still reach his nose even when he can't bend his elbows.

Then Nolan and I waited. And waited. And waited. We had 24 hours to get through. A two year old boy, without the use of his hands, who was supposed to maintain quiet activities for a full 24 hours. The nurses really didn't have much involvement in our care- we were basically just camping out and waiting until the 24 hours were over. It really felt a lot like camping- no showers, no access to our usual diversions, and we got to sleep on a thin mattress in uncomfortable positions. Unfortunately, S'Mores were not allowed.

Nolan's "No-No's" kept his arms from bending

Watching Cars.

And STILL watching Cars....

I did have the foresight to bring along a DVD player, and my sweet husband went to the bookstore and bought me a few magazines. I think Nolan watched Cars about 15 times, interjected with a few runs of "Signing Time." Dennis headed home to take care of Matthew, and Nolan and I camped out. We found the playroom, and the doting nurses brought crayons and let us out into the general hospital area after evening fell. We roamed the halls and the maternity ward waiting area, and finally found the small playroom. I had to follow Nolan with the pH meter box the entire time, and was terrified about it pulling out of his nose. I did figure out a way to put the box over Nolan's shoulders, but that was a tad dicey since he's so small that the box almost touched the floor when he walked.

He finally fell asleep at 10:45pm. I fell asleep shortly thereafter. And we didn't wake until 6:00am- only two more hours to get through. We ate breakfast, played in the playroom, and the nurse came to pull out the pH probe. That wasn't fun, but it was fast and we were very ready to go home.

I have to call to make the follow-up appointment today, and we'll find out the results from the pH probe and the labs at that appointment. Only 2 more weeks of waiting to find out if all of Nolan's eating/weight issues are medical or behavioral. I hope these next two weeks go by quickly- this boy needs to "bulk up!"

First Graduation

Nolan has completed the Baby Course of the John Tracy Clinic International Correspondence Course. Congratulations, little guy!

In Which Nolan Disrupts the Space-Time Continuum

Just one word of caution for those intending on creating a flannel-board calendar. Your kids might like it. A lot. Which means they will have no actual idea about what you planned on doing that day, but will have a great time peeling and sticking shapes onto the board over and over and over...

You get the general idea.

Definitely go with Julia's white board concept- it is far superior for recording daily events!