Carving Our Own Path

I met with our new speech pathologist yesterday, and am so very happy that we finally have someone who has worked with hearing loss before. She noticed Nolan's earmolds weren't seated tightly enough and showed me how to really get them sealed. We talked for quite some time about his level of loss (moderate) and what we want for him. I told her we wanted to go the AVT route because his aided hearing is in the normal range and we want him in a mainstream school setting.

I also expressed some concerns, because Nolan cannot hear us in restaurants (even aided) or when there is a lot of background noise. Bath time also causes some concern for us, because he sometimes seems to hear us and sometimes seems to be in his own world (kids with moderate loss are often accused of "selective hearing").

After some conversation, we came up with a plan that would work for our family and our situation. We will not go with a strict AVT plan, but do AVT therapy and learn some bath related and food/eating related signs. This sort of flexibility works well for us, and eases some of my anxiety about taking him to places where he simply can't hear well.

She was astonished that our former SLP wanted to reduce services for Nolan, especially when his test scores show a lag in receptive language. She said this is a common finding in kids with hearing loss, so we need to really work on this area and narrate our activities, step up the nursery rhymes, and sing and play one-on-one with him.

To that end, we have a new nursery rhyme that Nolan loves, and incorporates several speech characteristics:

(Place baby on your knee and gently bounce him/her in time to the rhythm of the rhyme)

This is the way the ladies ride, pace pace pace.

This is the way the gentlemen ride, trot trot trot

Then along come the country folk!

Lululululululululu!

• For the "ladies ride," your voice is high and soft, and the tempo is slow.
• For the "gentlemen's ride," your voice is low and staccato, the tempo is fast.
• For the "country folk" you trill with your tongue (think Mork channeling his home world*), and move the baby around in a silly pattern.

Nolan seems to love it, especially the "country folk" portion of the rhyme.



*I hope people remember Mork and Mindy.... I'm starting to feel old!

A Fresh Start

Our new SLP called and set up times for therapy this coming week. After ten minutes on the phone, I realized several things:

• Our former SLP never took a look at Nolan's audiogram.
• Our former SLP never asked about communication modalities.
• Our former SLP really knew NOTHING about hearing loss!

The new speech language pathologist asked if I had a current copy of Nolan's audiogram. I told her we most certainly did, and would be repeating a few frequencies on Tuesday. She asked if we had thought about communication styles, and noticed we had expressed an interest in auditory verbal therapy in his IFSP. I had put AVT in his IFSP on a lark, knowing that there were probably no therapists familiar with the technique in our area.

Lo and behold, the new SLP has done AVT with one of her former charges. She has also worked with a total communication model, so she will accomodate whatever we choose to do. We actually get a speech pathologist who has experience with hearing loss? I'm doing a little tap dance as I type this! We want to proceed with AVT, so she requested that we get an aided audiogram to make sure Nolan is getting full access to all the sounds of speech. His level of loss should mean that he has access to all the sounds of speech with his aids, but we should verify his responses when aided.

She will also work with Matthew, since we have a package deal going in the early intervention department. Matt will probably graduate from EI at his six month review (the child still has some articulation issues, but has broken out with 3 and 4 word sentences lately). I would like to get one last hearing test before we boot him out of the system, though... just to make sure!

Staying on the Path to Success

Nolan has been demonstrating wonderful verbal skills for his age (babbling five different consonants and two vowels), which led to his speech language pathologist recommending his discharge from Early Intervention two months after he started the program. I fought that and won, so I was obviously surprised when she suggested reducing services two months after the issue was settled. Luckily we had an IFSP meeting coming up, so I called various sources and found a person who would be a better speech therapist to Nolan (via our local stellar audiologist).

Our (now former) SLP wanted to reduce Nolan down to once per month, then once per week after I argued. With no other options for services in the area (no auditory-verbal therapy, no teacher of the deaf, no cued speech classes), I would really like him to continue his twice weekly sessions.

We are very fortunate with our EI coordinator. She is behind us 100% and has assigned us the speech language pathologist who has worked with a deaf child in the past. Nolan's level of loss is only moderate, but at least this SLP has a background in the needs of these kids. We get to keep our twice weekly sessions and the new SLP starts next week! I am a happy camper.

We did note a couple of "discrepancies" in the testing report written up by our former SLP, including that Nolan responds to all environmental sounds (this is the one area that he is not at age level). She also stated that the reason Nolan was referred to early intervention was for a severe speech delay. His hearing loss was only mentioned in a brief sentence in the middle of the report. This is definitely one that didn't "get" the effects of hearing loss on development.

We have won this battle, and are staying on the path to success for Nolan. With the right supports in place, I know he's going to soar.

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...

$3.96

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!

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!