Preemie Teeth

I've added a new link in the sidebar about dental problems in preemies. Noah deals with the following dental issues:

1. Intrinsic staining: this is a nice way of saying that his teeth are mostly green with a bit of yellow closest to the roots, and there's nothing we can do about it. The most probable theory is that this was caused by his liver issues in the NICU, although another likely theory is that it was caused by a medication.
2. Enamel hypoplasia: this means that Noah doesn't have enough enamel on his teeth, which can cause all sorts of problems. The biggest concern is cavities and so far we've avoided that. Noah does currently have a chipped tooth, though, and there isn't enough enamel on the tooth to adhere a filling or crown to, even if they did make crowns in green (which surprisingly, they don't).
3. Oral aversion: this isn't technically a dental problem, but brushing Noah's teeth can lead to vomiting, and that seems like a problem to me.
4. Severe GERD: again, this is not technically a dental problem. But when Noah's reflux isn't under control he vomits a lot, and that's not at all good for your teeth.
5. Tooth crowding: I'm not at all sure that this is preemie related but Noah's mouth is too small for his teeth. The teeth that are in there right now are super tight and while his gums are swollen enough to make his dentist think his 6 year molars are on their way soon, there isn't enough room for them to come it.

Over all our plan is to spend the next few years encouraging dental hygeine and hope that some of Noah's baby teeth last long enough for his adult teeth to come in. Depending on what kind of shape the adult teeth are in, we'll make a more long term plan that might include caps, crowns, braces, or even dentures. For now I'm just worried about making him grow so he has room for those 6 year molars.

20/80

We had Noah's low vision assessment this morning and I'm feeling quite happy about how it went. Noah has had an estimated range of vision since he was about 8 months old and the eye doctor added ONH, exotropia and nystagmus to our ROP stage 3 zones 1-2 with plus disease diagnosis. We were told that based on how his eyes "looked" his vision would fall somewhere between 20/70 (legally low vision) and 20/400 (20/200 is legally blind). This range was enough to get us hooked up with the department of vision and enough to get us on the VA deaf-blind census, but it is really quite a broad range. Well today, we got a number! 20/80 is firmly in the "low vision" category - yahoo! Of course Noah is still considered deaf-blind whether he's legally blind or not (and is actually still probably legally blind based on his field loss, which is estimated at 10-20 degrees), but 20/80 with a significant field loss is WAY better than 20/400 with that same field loss. The real goal of the low vision assessment has little to do with getting an accurate visual acuity, but it's too exciting to leave out.

"Dr. Mike" as Noah called him, had lots of cool low vision tools. The one that will have the most immediate benefit is the dome magnifier. Noah's reading level is to the point that we're starting to run out of large print baby books for him to read. The dome magnifier will help magnify standard print so that it is accessible to him. He'll also try out a CCTV for the same reason, but it doesn't have the same kind of portability, so it's more for large textbooks or magifying what is written on the board at school than for pleasure reading.

Noah will also be trying out a monocular for viewing things at a distance (like when we don't want him 6 inches from the TV!). At first he wasn't too into it, but once he realized he was actually seeing things on the other side of the room he was super excited. When he's older he can get something like this, but they don't come in kids sizes so he gets to be a one eyed pirate instead. Arrrgh, me matey!

We may also try a screen magnifying program on the computer called Zoomtext, although somene that I talked to today recommended a different program called Magic instead. Right now he does fine with us just increasing the screen size on our home computer, but as he starts using a computer more at school, one of these programs will be useful. Also at home we will hopefully be getting one of these keyboards so that Noah can work on being more independent on the computer.

All of this stuff plus this and 2 of these makes for an awful lot of tools for one mom to keep track of, but seeing him learn new things makes it all worth it.

P.S. That picture is obviously not recent, but I think it's great for a post on Noah's vision loss because he's facing straight ahead to the camera and yet isn't looking at it with either eye. Who know visual impairments could be so cute!?

Speech, Language, and Listening

Before Noah got his cochlear implant, we never had any question about his language acquisition. He just didn't have any. He understood that he could use his voice for communication thanks to our first awesome AV therapist and even tried to do that but that whole pesky concept of there being more than one sound in the English language was a bit beyond his abilities at that point.

After Noah's CI he took off amazingly, at least in terms of vocabulary. By the end of that first summer he was putting two words together and had a larger vocabulary than we could keep track of. However, while Noah is very good at putting words together to say what HE wants to say, answering questions/having a conversation with someone else is a bit more difficult. Whether that's because of his dual sensory loss, his preemie brain, or because we all became so enamored with the kid who went from no language to 100 word vocabulary in less than 2 months that we forgot to push the listening, I'll never know. I do know that his current AV therapist doesn't consider him to follow a "normal" pattern in his speech & language development (although she's refrained from labeling this a bad thing).

So here we are today. We recently had a progress report from AV therapy, and this is what was listed under "current skills and progress":

Auditory feedback/speech babble: Sentence level feedback in excellent. We are continuing to work on prosity as we work toward a more natural sounding speech pattern. Noah's speech is often at a low volume with limited variation in pitch. Given Noah's limited vision, his affect is less animated making inflection even more important for his communication partners, particularly peers.

Auditory discrimination/memory: Noah uses his strong internalized sense of language when enountering auditory memory tasks [if you give him a list he makes a story out of it to remember the items - super cute!] . Tasks presented as lists or series are more difficult to retrieve.

Auditory comprehension: While the bulk of Noah's vocabulary is acquired incidentally, descriptors require more deliberate attention, given visual impairment. Noah is still working to attend to and comprehend language that he overhears and context that is implied.

Expressive Skills: Noah has a mature vocabulary, though his use of syntax is less developed. Noah can initiate topics, but has more difficulty maintaining a topic selected by a communication partner, particularly a peer. Noah can provide information with details, though he does not yet give a cohesive narrative.

So there you have it. Not too bad for less than 3 years of listening, but still a ways to go before we have an effective communicator on our hands.

A Fun New Game

Fortunately, for every "I can't believe I drive 2.5 hours for THIS!" AV therapy session, there are a number of good, beneficial sessions. This week we played an awesome game called "Look Who's Listening!". Noah really rocked the discrimination tasks as always and the auditory memory tasks were good practice without him noticing that he was learning. If only every thereapy session could go that well. I guess when you're dealing with kids more good that bad is probably a better goal. Anyway, check out that game!

A dishonorable discharge?

Miss Carol says there's nothing else she can do.

Noah's making good progress with self-feeding - generalizing the skill could take months. He'll eventually learn to "scoop and lift" with his spoon. It'll just take time.

Noah's just not ready to chew. He is still at basically the same place he was back when he started the day program almost 3 years ago. We failed. Prematurity sucks.

We have made lots of progress in the last 3 years. Noah has gained 15 lbs and is on the charts for both height and weight. He used to vomit 10-15x/day, now it's just a few times a week. His reflux is finally under control.

When Noah started the day program in March of 2007 he drank 2.5-3 oz of formula 7 times a day (half of that was dreamfed). Now he drinks 4.5 oz of formula and eats 6 oz of pureed table foods 5 times a day. He has favorite foods! That's not something I ever thought would happen.

But he just won't chew. Can't chew? Who knows. We failed.

She says we're just taking a break. Give him a few months/years. When he's ready we'll come back and pick up right where we left off. I don't believe her. She's been saying "if" he chews instead of "when" for a long time now. She cried and hugged me when we left today. I don't think she believes he'll ever chew. I don't think I believe it either.

Prematurity sucks.

AV Therapy (aka banging my head against a wall)

Overheard in AV Therapy today...

Therapist: "Look at all these hats for Mr. Potato head." [lets Noah hold each hat and then puts them just out of reach] "Mommy, which hat do you want?"

Mommy: "I want the red hat with the flower."

Therapist: "Noah, which hat would you like?"

Noah: "The blue cowboy hat"

Therapist: "Tell me in a sentence please."

Noah: "Do you want the blue cowboy hat?"

Therapist: "No thank you. Which hat do you want?"

Noah: "You [points to self] wants the blue cowboy hat. That one. [points to blue cowboy hat]

Mommy (modeling): "I want the blue cowboy hat, Miss Sarah." [Miss Sarah hands the correct hat to Mommy and then Sarah/Mommy takes turns modeling the expected script for a few minutes]

Therapist: "Which hat do you want, Noah?"

Noah: "Do you want the blue cowboy hat?"

Therapist: "No, thank you."

Noah (obviously frustrated): "Noah [points to self] wants the blue cowboy hat on Mommy's potato [points to blue cowboy hat that Mommy's potato is wearing] on Noah's potato." [points to still empty spot on his potato]

Therapist: "Noah, why don't you try to start your sentence with 'I want...'

Noah: "...the blue cowboy hat"

Therapist: "Use a complete sentence. 'I want...'"

Noah: "...the blue cowboy hat."

Therapist: "Say the whole thing. 'I want the blue cowboy hat.'"

Noah. "Yes! That one!" [points to hat]

Mommy: "Noah, if you want the blue cowboy hat, what do you need to say?"

Noah: "I want the blue cowboy hat."

(A similar conversation occured for each item that Mr. Potato head wears)


Getting this child to speak correctly is going to be the death of me.

The End of a Decade

As we begin a new decade I find myself reminiscing about the last 10 years. In January of 2000 I was living in West Seneca, NY about to start my student teaching in Buffalo while my (future) husband was doing a semester abroad in London. I tried to find a picture from that time, but

I don't have anything that old scanned on this computer.

In 2003 I got married to my best friend and less than 2 years later (although it should've been a bit more) we became parents. I left my career as a school teacher to be a stay at home teacher to one very special little boy.

Way back in 2000 my dream was to teach in an inner city school for a few years while I got my masters and then go on to get a doctorate and do lots of fun educational research. Higher education dreams made room for a bit of real life, but I think my little research project is turning out well so far.

Maybe someday I'll revisit those dreams, but they don't seem as important to me as they once were. Funny how things change, isn't it?