Little Four Eyes

Very cute in his new glasses!

The most noticeable change in little man’s life are his eyeglasses.  A few weeks ago his ophthalmologist said that Connor’s vision in his left eye was still quite a bit worse than his right and had not “caught up” as we had hoped.  Honestly, even without Joubert Syndrome, he would probably be destined to wear glasses at some point as my vision isn't the greatest.  And so Connor now has these nifty little glasses which he wears all day, every day and also an eye patch which is only for two hours each day.  The combination of the two is really quite the look!  He’s tolerating both ok.  He has learned how to pull his glasses down and off his face, but only does that a few times a day.

A patch and the glasses at the same time are
a bit much, but he's still smiling!

We finally got into the Neuro-Genetics clinic at CHOP after waiting since September for an appointment.  It was mostly a frustrating appointment for me – three and a half hours, four specialist, answering the same questions over and over, hearing about how far Connor still has to go, hearing about all the things that would be good for him in his development that we just don’t have the capacity to do right now.  All the other doctors and therapists have been with us almost since Connor’s diagnosis, so when I visit with them they see the progress.  This was the first time these folks had seen Connor so it felt like all they could see were the delays.  Hard, frustrating truths spoken.  Connor and I left CHOP that afternoon with a list of new recommendations for equipment, tests and therapies and tears in our eyes.  We were both tired – tired of so much.

Making a big, fun mess with bananas

Feeding has gotten a little better in the last few weeks.  We now offer Connor choices at meals – he can have a spoonful of puree or a puff (those little dissolvable cheese doodle like foods).  It seems that most of his tantrums were just a way of exerting control.  Which makes sense to me – eating is really the only thing Connor has control over.  He can open his mouth if he wants.  He can’t decide which toy to play with, what to wear, where to go or so many other things.  So he demonstrated his need for decision making through being a punk at meal time.  Hopefully this choices thing will continue to be enough to soothe him for a while.

Connor also continues to show interest from time to time in self feeding.  Today he had a delightful time playing in mashed bananas and then putting his gooey fingers in his mouth or his hair or his eye. :)  He also picked up the spoon several times and moved it towards his mouth.  Poor little buddy knows where that spoon is supposed to go, but his muscles just won’t coordinate enough to get it there right now!

Waiting for the dentist to come in!

And finally, another first for Connor today – his first visit to the dentist!  I was probably crazy to try it with this wiggly worm, but he still likes to brush his teeth so I thought he might not mind the dentist.  He did pretty well.  He let the hygienist brush with little resistance.  He wasn’t too crazy about the metal objects going into his mouth, but suffered through that for enough seconds for the dentist to declare his mouthful of teeth look good.


This last month has been super busy and crazy and quite frustrating at times.  It makes me think of one of my favorite movies “Silver Linings Playbook” and a great quote from there – “Excelsior.  Excelsior… It means you know what I'm gonna do, I'm gonna take all this negativity and use it as fuel and I'm gonna find a silver lining, that's what I'm gonna do. And that's no bulls**. That's no bulls***. That takes work and that's the truth.”  Cheers to the silver lining!