Ophthalmology, Pediatrician, NuEyes, Read-a-Thon and Annual IEP

As we move into the Fall we have several doctor appointments that started with the Ophthalmologist, Dr. Jeffries.  We had a very good visit and I marvel at how much easier the appointments have gotten now that the kids are mature enough to follow directions and sit quietly so I can talk to the doctors.  Cole had his eyes dilated and his prescription was updated.  I am excited to share that his vision has improved slightly! Not by a lot, and we don't expect that to necessarily continue, but it was a nice surprise.  Unfortunately he is still considered legally blind, but any improvement is always welcomed. As he is able to better understand the tests we hope we will get a better idea for what he really can see.  The doctor believes the improvement was a result of the surgery that allowed better alignment, reduced shaking and from his increased ability to accommodate by adjusting his null point to see (off centering his head to get the clearest image).  One big difference with this appointment was that the doctor recommended Cole get bifocals.  What I didn't realize is that the prescription he needs causes images to get smaller.  So by adding the bifocal for reading, we can slightly increase the size of what he reads to help him see it better.

After the appointment we drove to the optometrist's office (located with the low vision specialist) to order his new glasses.  I've been wanting to get glasses without a strap for a while now, but he still tends to throw them at me when he gets mad so the durable rubber has been a very good option.  He has been wearing the Miraflex since he got his first pair at 11 months old.  Unfortunately I didn't realize how good we had it!  Finding a pair of glasses that work for Cole was VERY hard. First, he has a thick prescription which rules out any wire frames.  Then, the bifocals rule out any rectangular frames because the real estate is too small for the bifocal.  And given his prescription we can't do progressives because again, he would lose too much real estate on the lens. One thing I didn't realize was that his temples are actually pretty wide, possibly from the plagiocephaly he suffered from his extended stay in the NICU.  So many of the glasses were too tight on the temple and would push the glasses down on the nose.  After an exhaustive search and lots of attempts, we got to pick from two pair.  But we both really like them and they are working out well.  I did take him back once already to have the arms adjusted so they would stop falling on his nose.  He is adjusting well to the bifocal and seems to be happy with them.

While visiting the optometrist I spoke with the low vision specialist about our upcoming appointment with the rep from NuEyes, the visual prosthetic magnifier.  He further explained that the reason these glasses will help Cole is because we can adjust the refraction with glasses, but the tissue center of his eyes is permanently damaged.  He said that pretty much everything Cole sees is fuzzy, but when something is small, just losing a few "pixels" of an image makes it difficult to discern.  When you enlarge an image, losing a small pixel has much less of an impact because the percentage of the image that you lose is much smaller.  So the more we can magnify images for Cole, the better he will be able to see them.  We discussed the many questions I had for the rep and was glad we were able to touch base.

The following day I met with the rep from NuEyes, Kristi, and she setup a full demonstration of the glasses with Cole's TVI at the school.  We discussed models, durability, usability, and future upgrades.  Then we brought Cole into the library to try them.  He immediately went to the fish tank in the library to look at the fish.  The TVI said he had tried to look at them the previous day but of course you can't get close to a fish.  In the picture shown he went from only being able to read the first two numbers (he read the 6 as an 8 likely because it was fuzzy) to being able to read all three rows of numbers with the glasses.

Although the glasses are VERY cool (much like virtual reality) they will take some getting used to.  They are voice activated for zoom (up to 12 times) and will allow him to see more of what's going on in the classroom and have them read to him if his eyes start to fatigue.  One example is using them for group reading in the classroom.  Long term he would also be able to do internet searches.  Outside of the eduction setting, he may also be able to go games or shows and see what's going on.  Unfortunately it will be another technology to integrate into the curriculum and determine what and how it should be used.  Not to mention they are $5,995 and you probably remember he broke his cane in half the first week he had it.  The rep said The Lion's Club focuses on grants for visual disabilities so we are investigating what opportunities may be available through them.


We also kicked off our school fundraiser that day so I was able to go into the kids' classrooms and have them read to me.  I was so impressed with how much progress Cole has made this year using his CCTV.  Although it's still hard to position physical books and worksheets, he has mastered online reading on the device and that is a great option for him.

Cole also had his 7 year check up and flu shot.  Although he resisted the flu shot and had to be held down, the appointment went well and the doctor is pleased with his growth pattern.  He struggled for so long to even be ON the chart that it's nice to see an even, upward movement for height and weight and go into an appointment with no real concerns to address.

It's also IEP time for Cole which mean his school goals need to be reviewed and updated.  We had his meeting today and I have mixed feelings about the changes.  Most of his services will remain stable into the new year with the exception that his occupational therapy has been reduced to consult only (no service time).  I am slightly concerned about whether his hand writing will decline given they have worked on this a lot, but just as with private OT, his therapist feels he has made amazing progress and is no longer delayed compared to his normally developing peers.  But I know this is something we can and will work on at home to improve the clarity.  Also, the team talked about the option of the NuEyes and we decided to reinvestigate at the end of the school year.  The team is worried about integrating another technology when he's just getting proficient on the ones he has now.  Also, he struggled slightly to figure out how to use the glasses and we think a little more maturity will greatly help his ability to use them to their potential.

A lot of updates, but all good.  Next up is neurology and neurosurgery in November!