Friday, February 12, 2010

Concept Development at the Opening Ceremony

"It's a star." (Nope, it's a maple leaf.)
"It's kind of like a picnic." (Those are Canadian Mounties carrying a flag.)
"It's to sleep on a bed" (They are going to hang it on a flag pole.)
"She's singing Old Mary Mack." (It's called "O, Canada".)

When you don't see so great and you don't hear so great, sometimes it's hard to get the whole picture. Noah's constantly making connections, but they're not always the right connections. It's hard for him because he wants to understand it so bad. We'll get there, Noah!

Thursday, February 11, 2010

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.

Tuesday, February 9, 2010


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!?