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!

Cole's Monster Mash - Cole Turns 7!

And just like that, 7 years have come and gone.  Cole chose a Monster Mash birthday this year and invited his 1st grade class and friends to the house for a costume party.  It was a little chaotic given I was gone all week on a business trip and got home Friday night.  On top of that Johnny was deployed to Puerto Rico helping with the disaster relief of Hurricane Maria.  But I was able to pull it together!

Within two hours of getting home from St. Louis I had most of the decorations up and the table and tableware set and ready for the next day.  I still needed to get the mums purchased and planted so the house was presentable - all my flowers died since I forgot to leave a note to water them while I was gone.  I needed to grocery shop, pick up the cake, make the balloon spider for the ceiling, make the skeleton lanterns and of course get the dry ice for the magic potion!  After getting all I could done, Reagan and I took Cole to Cheesecake Factory for his birthday dinner with my friends Vicky and Justin. It's his absolute favorite so of course we had cake and sang Happy Birthday.

The next morning we had a lot to get ready but it went smoothly.  Mums were purchased and planted.  We were visited by a beautiful memory of Kendall when a butterfly landed on one of the mums.  When we got home one of Johnny's co-workers stopped by the house to drop off a present for Cole with a balloon.  He and his wife then offer to get the dry ice for the potion - huge help!!  After they left Cole looked at me kinda sad and said, "mom, it's not fair this whole day is about me and nothing is about Kendall.  Can I send this balloon to her in Heaven?"  My sweet, sweet boy...so we wrote her a note,  he let it go and we watched as it disappeared into the beautiful blue sky.  It was a bitter sweet day holding the party on the anniversary of her loss, but I love that he was thinking about her and wanted to give her something for her birthday.  Not a day goes by that we don't think about her and wish she were here.

Overall the party was a success, but I had a lot of rowdy 7 year olds!  The kids had fun playing on the moon bounce, painting pumpkins, beating up the eyeball piñata and running crazy in the basement.  One thing I love about our house is that we have a basement made for play.  Between the rock wall, monkey bars, air hockey, roller coaster, balance beam, see-saw and drum set with microphone for singing, there is something for everyone. For those who didn't come in costume I had lots of options for masks the kids could wear and then take home.  And of course they were able to take home the pumpkins they painted.  Cole's costume this year is the Scream character with a two layer plastic mask that releases blood when you squeeze the "heart" bulb in the costume.  I never would have imaged that two other boys from his class had the exact same costume! They thought that was pretty funny...but I doubt any of them have actually seen the movie or they wouldn't be laughing!  The kids had eye ball cake pops, chocolate covered finger pretzels, mummy hot dogs and a magic fogging punch (with dry ice).

Needless to say we were all exhausted by the end of the day and slept well!  We also celebrated Cole's birthday Sunday with my parents and sister and then again on Monday with Johnny's parents.  So it was a four day celebration!  It was hard not having Daddy there, but we are so proud of the work he is doing to help the people in Puerto Rico and hope he will be home soon!