What's Up, Doc?

This year has been off to a wonderful start! We have been busy with a bunch of doctor appointments, meeting three new ones already. Thankfully they have all been great visits, leaving us with the best news we could have received. Our therapists and neurologists have suggested for a while now that we see a few specialists, but we weren’t quite ready to until now. I guess you can say we were nervous to get more not-so-great news, so we kept putting them off. Thank heavens that hasn’t been the case so far (we still have one more specialist to see).

Before I go into detail about all the new doctors he’s seen, I’d like to give a quick update on his most recent visits with the neurologists. Bryce’s seizure have gradually been increasing, which is expected. Normally we increase one of his three medications and that helps for a little while. This time we decided to try increasing the ratio of Bryce’s diet to 3.5:1. Our goal is to get up to 4:1, but that will take a bit more time. Although the Ketogenic diet hasn’t helped with his seizures as much as we would’ve liked, we are hopeful a higher ratio might keep more of them away. We also asked if we could get Bryce a rescue med (a medication that will stop his seizures if they get bad enough that we consider taking him to the ER), just in case. We’ve never had to use one and hopefully we never will.

Aren't his eyes stunning?!

The first new doctor we saw was a Pediatric Ophthalmologist. Our wonderful Vision Therapist recommended we see one, so we finally did. When she first started seeing Bryce she suspected he has Cortical Visual Impairment. To put it basically, CVI is when you can see something but your brain can’t interpret what you’re seeing. It is a very difficult diagnosis to get mostly because it’s not necessarily a problem with the eyes, but a problem with their connection with the brain. We knew that Bryce wouldn’t be diagnosed with CVI when he saw the eye doctor, but we still wanted to know how well he can see.

I went into the appointment expecting to be told Bryce needed glasses. What the eye doctor told me was definitely a pleasant surprise. He also suspects CVI, but of course, didn’t diagnose it. Other than that, Bryce’s eyes are developing just fine! If anything, he is a little near sighted but nothing too worrisome yet. In fact, his eyes look good enough that he doesn’t have to see the eye doctor for two years.

He's loved being frog-legged since the day he was born!

Next we had Bryce’s hips and spine checked out by an Orthopedic Surgeon. Our Physical Therapist recommended we get Bryce’s hips checked as a precaution. You see, something called Hip Dysplasia  (simply put, dislocated hip) is common in children similar to Bryce. Before we met with the doctor, he had an x-ray taken of his hips. When the doctor came in he brought the x-ray to show us how perfect his hips are! Bryce’s hips are just fine because he has always kept his legs in a frog-like position, the best position for developing hips.

While meeting with the doctor, we asked him the look at Bryce’s spine. Last summer we had our pediatrician look at it and he found it was crooked. At that time the curve wasn’t too bad and the pediatrician felt we could straighten it by strengthening his back muscles. So our Physical and Occupational Therapists gave us different exercises to help us do just that. The Orthopedic Surgeon felt Bryce’s spine and looked at the chest x-ray he had when he got his ng-tube and his hip x-ray. Although he couldn’t see all of Bryce’s spine on the x-rays, he could see enough to tell that his spine was straight! All the different exercises paid off! I can’t even begin to describe how elated we felt with all the wonderful news we received that day.

He still prefers to be frog-legged.

The final doctor we have seen so far this year was a dentist. I’m not going to lie, I was pretty nervous for this visit. Bryce doesn’t like things being put into his mouth unless they taste good. I have to smear food on his toys so he’ll tolerate a little oral stimulation. I was worried that Bryce would have a HUGE meltdown while the dentist checked his teeth. Jus was convinced they’d have to put Bryce to sleep so they could examine him. Can you tell we tend to jump to the worst-case scenario?

Thankfully neither of those happened! The dentist was really good with Bryce. I was able to hold him while we laid his head in the dentist’s lap and he examined Bryce’s teeth that way. He never even cried once!

Doing Bryce's exercises on the yoga ball.

Although we were worried to take Bryce to the dentist, we still wanted his teeth checked out. Due to all of Bryce’s seizures, most of his bottom teeth are chipped. He also grinds his teeth a lot, especially if he’s feeling frustrated or bored. We were curious to know if there was anything we could do to help prevent these things. Unfortunately, there isn't. However, if we notice sores on Bryce’s tongue from rubbing across his jagged teeth, the dentist made sure we knew how willing he was to smooth them out.

We have been busy these past two months going to all the new doctors, but we're so glad we did! It feels like a huge weight of worry has been lifted off our shoulders. Here’s to hoping the rest of the year goes just as well!