Thursday, May 29, 2008

Smart Little Guy

We're gearing up for our IFSP meeting later today. Nolan has been doing so well that they want to reduce services. I would rather wait until he's talking and listening consistently before we cut off his only intervention possibility. The goal here is prevention. Unfortunately, most early intervention services work off a "failure" model and want to withold services until the child fails, then start services again. I would much rather keep services going to prevent a delay in the first place!

We'll see how it goes...

Friday, May 23, 2008


OK, so the kid eats things occasionally. Usually a dandelion or something completely innocuous (like playdough). Sigh....

I wasn't sure what to title the subject of this one. It could have been "2 Pounds Sterling," or "In Which We All Ride in an Ambulance," or "This Too Shall Pass."

Matthew had a couple of coins this morning- I glanced and saw they were British coins from our bedroom. I was going to take them away, but went to put the carpet shampooer away first. He USUALLY doesn't put things in his mouth anymore. Usually being the key word.

I came back downstairs and Matt is whining and covered in drool. A wet fist holds the penny. The other coin is gone. I asked the boy where the other coin went.

"Matthew, where is the other money?"

"I eat!"

"Did you really eat it?"

"Uh-huh! I eat!"

I thought for a minute that we would just let it pass through his system, then thought better of it and gave the pediatrician a ring. 2 hours later they called me back and sent me in to outpatient services at our local hospital. They wanted an X-ray to make sure the coin went into Matthew's stomach and wasn't lodged anywhere else.

An hour later we have X-ray films and a very large white circle shows that the coin was indeed swallowed, and was not moving through his system. It was stuck in his esophagus. I had both boys on my own at that point, and they called the pediatrician who instructed the nurse to take us to the emergency department.

Matthew, 20 minutes later, was situated in the ER watching Winnie the Pooh as I was frantically trying to get hold of Dennis. Large objects that sit there for a long time usually won't come out on their own if they are stuck in the esophagus. They usually have to put the child out, use a foley balloon to inflate the esophagus, and withdraw the item. Our local hospital can't do the procedure on children, so we are to be sent to Buffalo Children's hospital via ambulance, in case the coin obstructs his airway (a very real danger at that point).

Dennis finally arrives (I nearly had to send Matthew by himself for the 2 hour ambulance ride) and I join Matt for the long ride to the hospital. Matthew thinks this is a ripping good time, shouting, "Go truck! Go go truck! Big truck! Go truck!" throughout the entire ride. We get to the hospital at about 2pm, exhausted. Matt is VERY hungry (his last meal was the coin at 8:00am, and breakfast at 7:00am).

We sit in the ER at Children's until 4:00pm, when they finally come to get Matthew for X-rays. Matt is sitting on Dennis's lap and suddenly does some gyrations and pumps his neck up and down, swallowing hard. Sure enough, they did the final X-ray before the procedure, and he had managed to get the coin into his stomach. Good news! No nasty procedure and we were free to go home to let the coin pass (a 2 pound sterling, after comparing various British coins to the X-ray spot).

So now we are waiting for a diaper worth $3.96, according to the current exchange rate. Though I probably won't be using THAT coin any time soon!

Thursday, May 22, 2008

He Ate the Queen

Matthew had two coins in his hand this morning. He doesn't usually eat things anymore (key word: USUALLY) so I put the carpet shampooer back in the closet and came downstairs to get the coins off him.

Tip for the future: remove coins from child BEFORE putting the carpet shampooer away.

Covered in drool and crying, I asked him what was wrong. I noticed he only had one coin (an English penny) in his hand. I asked him where the other coin was. In clear, beautiful English, he said: "I eat."

I'm not quite sure what the coin was- it was either an English coin or a Swedish Krona. I hope it wasn't some of the Chinese currency we have laying around (God only knows what metal THOSE are made of). After going through our various stashes of foreign coins, I'm pretty sure it was a British Pound. About the size of a nickel and twice as thick.

Darn those international business trips!

Next up: waiting for the pediatrician to call back...

The Next Step...

...and the final step in our diagnostic process will be an MRI. We have found no clues as to why Nolan has hearing loss- a nearly flat sensorineural loss in the moderate range (sloping up to mild in the high frequencies). The MRI will probably be run in July- another sedation for the little guy. They only sedate one day per month, and we have to get insurance approval, so it will be a little while before we have the exact date of the scan.

Our ENT initially told us that the three markers they ran on Nolan were not sufficient and there were several more markers that could be run. I saw her yesterday and (besides not quite remembering which patient Nolan was) she told us that there wasn't anything else to test for. The MRI will show any problems with the soft tissue in his inner ear that the CT scan couldn't detect. The only appointment remaining after the MRI will be a visit to the ophthamologist when Nolan is a toddler to rule out Usher Syndrome (unlikely, but Usher II can have progressive moderate hearing loss).

We don't go back to the ENT until September, which gives us a LOVELY four month break from that office. The fewer trips to the doctor, the better! My credit card cringes every time we approach a fuel pump.

There are days I really, really wish he had tested positive for Connexin 26. I feel like we're always waiting for the other shoe to drop with some rare syndrome (it doesn't help that the little guy had some head issues when he was younger- luckily his head seems to be rounding out). His forehead is still a little bulgy, but you can only see it if you look at a certain angle.

The other good news is that his otorrhea has finally stopped (no more infection leaking from his ears). Hopefully we will be free of fluid/infection from now on. I can finally throw those eardrop bottles away!

Monday, May 19, 2008

Awesome Audiogram

I received the official report from the audiologist with Nolan's audiogram- his inconsistency with response to sound is DEFINITELY behavioral. His audiogram shows a moderate loss (barely into the moderate range) sloping up to mild. The details:

At 500Hz we could only get a soundfield response at 50dB.
At 1000Hz (soundfield) we obtained a response at 40dB.

In the higher frequencies we did get ear-specific data and soundfield data.

At 2000Hz we got a soundfield response at 40dB, right ear gave a 40dB response and the left ear gave a 35dB response.

At 4000Hz we got a soundfield response at 35dB, right ear at 35dB and left ear at 35dB.

His pure tone average is about 42dB, which puts him in the moderate range, sloping up to a mild loss.

His speech reception thresholds were at 35dB bilaterally. The reliability of the test is considered good/fair. We will be repeating a couple of the points on the audiogram when we return in three weeks to pick up earmolds.

This basically means that without aids he can't hear whispers or very soft speech, but he should be able to hear us speaking at a regular volume in close range. Why he's not consistently responding to us remains a mystery, but at least we know that it isn't due to his current hearing level.

We see the ENT on Wednesday to check those frustrating ears (hopefully no more infection) and to schedule an MRI.

Friday, May 16, 2008

On a Side Note...

Nolan's skunk costume FINALLY fits. He wore it for Halloween (at seven weeks old), but it was HUGE on him! Ann Gedes, eat your heart out.

Thursday, May 15, 2008

Booth Test Results

After a LONG night (Nolan decided sleep is highly overrated), we headed up to BHSC for his test. I was happy to see that their puppets are a rabbit AND a puppy. I'm rather partial to the puppy, but Nolan didn't give one whit for either one. He was far more interested in the toys the audiologist had.

At first he wouldn't condition at all, and gave NO response to any sound level. This is what we see often at home- he simply doesn't respond to our voices or the sounds around him. He wouldn't even respond to us talking to him within the booth! After a while he was conditioned and started to look at the dancing bunny. We did get ear specific information for the high frequencies, but had to go to a soundfield for the low frequencies since he quit giving responses. In the soundfield, he responded at 50dB for the low and mid frequencies.

His overall results are quite similar to his ABR, though he did require some added amplification in the high frequencies. He used to hit normal at some point, and now his best hearing is at 35dB. Its not a big drop, though, and his low and mid frequency hearing seem to be the same as (or maybe a tad better than) his ABR results.

We amped up his aids and took new impressions. We'll be going back on June 9th to repeat a few of the questionable responses. He is so variable in his response to sound that it can be frustrating to get an accurate result.

I should get the official report in the mail soon. We see the ENT next Wednesday, so I'm sure we'll get to discuss the results with her and talk about the MRI she wants to schedule.

Wednesday, May 14, 2008

Behavioral Test Tomorrow

Tomorrow is another "first" for Nolan, though its one I never anticipated when I was pregnant with him. Tomorrow we get to go into a sound booth and plot his first real audiogram. Up until now, his hearing ability was measured by ABR. While completely objective and fairly accurate, it is a measure of how much sound the brainstem is responding to and is not considered the "gold standard" for measuring hearing level. Behavioral testing is the gold standard, and Nolan is finally old enough to attempt visual reinforcement audiometry (VRA). Basically, they play tones and then a lit-up puppet dances. The baby begins to anticipate the puppet-show, so will look to the display box after a tone is played and before the puppet begins to dance. Let's all hope that Nolan has a deep love of dancing monkeys (or rabbits, or whatever else they use to motivate the little guys).

His last ABR was six months ago, and showed a moderate loss in both ears with a rising slope configuration. He was at 50-60dB at 500Hz and 1000Hz (depending on the ear) and was at 35dB at 4000Hz.

I am surprisingly anxious about the test. I worry that he's lost more hearing and may have a progressive loss. In reality, if he has lost more hearing- its not a big deal. He already has hearing aids and we can just hook them up to the computer program to provide more amplification. Logic doesn't help when it comes to matters of the heart. And my kids are basically my heart walking around outside of my body. I am hoping and praying his hearing level is where it was in November 2007, but trying to prepare myself for the possibility that it has gotten worse. I can't really gauge from his behavior, because he is so young and is rather variable with response to sound- hopefully he'll catch on to the booth testing game quickly!

Now I'm off to bake more cookies (I bake when I'm stressed). I think we'll have about 8 dozen cookies by the time my dear husband comes home!

Thursday, May 8, 2008

Review Time

We have Nolan's six month IFSP review in two weeks, and I have to come up with goals. He'll be almost nine months old at the meeting, which means the goals need to be applicable for the ages of 9-15 months. Our ultimate goal is to have him attend our neighborhood mainstream school, so we are including this as a goal.
For language milestones I am thinking of:
Receptive Language:
  • Follows a one step command
  • Understanding the terms "look," "show me," and "come here."
  • Identify one body part

Expressive Language:

  • Spoken vocabulary of 5 words
  • Uses "Mama" and "Dada" to get our attention
  • Signs "more" and "all done"
  • Points to objects
  • Waves bye-bye

My brain is running on empty and I can't think of very many speech and language goals. We are doing some sign with Nolan, since his hearing brother has severe speech delay. We're hedging our bets and hoping that we don't have the same frustration issues we had with Matthew due to an inability to communicate. I can't really think of signing goals, since I don't know what to expect with development in this area.

Any ideas for goals are appreciated!

Wednesday, May 7, 2008

Protect Those Ears!

May is Better Hearing and Speech Month. Wear your ear protection and watch the volume on that iPod!

Thursday, May 1, 2008

We're Doomed

He's become mobile!

We're dealing with ear drops and some residual ear drainage, so his hearing aids have been out for a while today. Here's to hoping the Ciprodex takes care of the problem rather quickly!