What a crazy day! A good crazy. But a crazy day nonetheless.
We went to the follow-up appointment with the neuro-optometrist. Keegan tagged along since his appointment with the ENT was only 15 minutes after this appointment would end. Eli, fortunately, was still at school.
We started out meeting with the doctor. Can I just say again that I love this office and this doctor??? We didn’t wait AT ALL! We walked in the door and immediately back to a room and the doctor came in 2 minutes later. No joke! Anyway, Keegan sat quietly next to us watching Backyardigans on the MP3. The doctor filled us in on everything that they saw and didn’t see in our sweet little boy.
His eyes work together – that’s good. His eyes have a tendency to over correct and focus in too closely – that’s bad. This affects his ability to copy work from a board to paper. If affects the way he will see a baseball coming at him from the pitcher’s mound. It affects the way he will drive a car (someday, maybe 😉 ).
He cannot process visual information at the same time he processes auditory information. So, giving him a visual cue while we explain directions to him is actually a bad thing for him. He needs them one at a time and then put them together. He also cannot process visual and motor information at the same time. Fortunately karate is often recommended to enhance this skill!
We then went into a room with the vision therapist where she discussed how the therapy works and also discussed in more detail the testing she did with Eli. She was able to show us a test he did on the computer where he was wearing glasses that measured how his eyes were moving while he was reading a short paragraph. We actually got to follow the bouncing ball as it moved through the paragraph in the same way Eli did. No wonder the kid is having issues! His little eyes were all over the place. I couldn’t keep up and I was dizzy after the paragraph was finished!
It was recommended that he get intensive visual therapy for 21 weeks. He would meet with a therapist 1x/week and then do activities at home for 20 minutes a day, 5x/week. The idea is to retrain how his brain and his eyes and his body all function together. This should improve his reading, writing and motor planning. The catch?? The insurance company sees it as educational and therefore not a necessary service. They are covering nothing. Nothing of nearly $3000 means a lot of green coming out of our pockets that we just don’t have.
I’ve spent the better part of this evening on the computer researching grants and scholarships that could help us pay for this. I’ve applied to 3 different agencies in the hopes of piecing together enough money to cover the better majority so that we don’t go completely broke trying to get our son the help he needs. I’m hoping that these grants will pan out. There were so many that we weren’t eligible for because we missed the cutoff for applications by a couple of weeks or, in one case, by 1 day.
We left that appointment feeling frustrated at insurance but gratified that someone finally put a finger on what might be going on with Eli. All the things that so many people poo-pood are real and there is something that we can do about it.
Remember that Keegan was with us this whole time. The kid was such a good sport today! Of course, M&M ice cream cones are a great good behavior prize 😉
We went on to the ENT where it was determined that Keegan likely doesn’t need his tonsils and adenoids out. He was beyond thrilled to hear that! He sat in the chair while the doctor talked to us and shook his head no to every question that we answered yes too. Good thing he’s still to young to ask these questions of!
Plan of action for him? Nasal spray for the next 2 months to see if he will sleep better because perhaps he has some nasal congestion. We also got a referral to a gastroenterologist to look for possible reflux. Likely we will get a medication there too. We have an appointment there in mid June. Our hope is to meet with the pediatrician sometime between now and then to regroup.
So, for Keegan we know nothing new. Except, of course, that he very likely doesn’t need surgery or a sleep study. I think this ENT is Keegan’s new favorite doctor!
So I sit here tonight completely exhausted from the day. My emotions went on that roller coaster ride. My brain is close to shut down due to overload. My heart is aching that we may not be able to afford the therapy that Eli needs.
But, I am happy that there are some answers. We’ve searched for so long and we’re finally seeing some light at the end of the tunnel. We finally came across the right group of people who saw our son the same way that we see him. And that alone feels pretty damn good.