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.

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.

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!

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!

Protect Those Ears!

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

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!

ENT Post-Op Visit

I haven't quite decided whether its a good or bad thing when you don't have to sign in at the doctor's office because the office staff all recognizes you...

The ENT had a look at Nolan's previously-leaky left ear. Turns out there is still a decent amount of fluid and she wasn't happy about that. We got to take a fun trip to the procedure room and have his ear suctioned out (turns out he dislikes this even more than having his eyes dilated)! She added some Ciprodex drops. We were on our last day of Oflaxacin drops (day 7), so tomorrow we start the Ciprodex and continue that for seven more days. The Ciprodex has to be given 3x per day, so that ought to be loads of fun! Darn those leaky ears.

We go back in three more weeks to check on his ear and to schedule an MRI. I haven't consulted Dr. Google yet as to why they run an MRI vs. CT scan, but I'm sure there are reasons. I do know that MRI's can visualize the soft tissue structures of the inner ear and the CT scan (fancy X-ray) gets the osseous structures. For a quick recap, his CT scan was totally normal and he is negative for Connexin 26, Connexin 30, and the common mitochondrial mutations.

So we find ourselves questioning how much longer we will pursue the cause of his hearing loss. I don't want to put him through countless medical procedures for no real gain. On the other hand, if we missed some syndrome because we weren't vigilant... I can't even imagine how I would feel. We will proceed with the MRI and any additional genetics work that might be valuable, but we are also preparing for the possibility (probability) that we will never know the cause.

I did manage to remember the necessary prescription for his booth test on the 15th of May. I'm rather fortunate that my friend has the day off and can watch Matthew on that day.

Laurie tagged me for a meme, unfortunately Christian's Mommy tagged me first! I'll just post the link to my original response here, since I'm not that interesting and little changes in a few weeks, lol. I like reading blogs by adults who are hard of hearing or deaf, since they give insight to what it is like to have hearing loss.