May ’22 Update – Medical Trips & A Little Fun

Last week we made a trip to Edmonton (as we do most months) for a few of Arden’s medical appointments. This time we visited Arden’s pediatrician and the orthopedic surgeon that deals with his scoliosis. Then at the last minute we also ended up seeing an orthotist! 

Visit to the Pediatrician

Some concerns I had to bring up to Arden’s pediatrician involved him not quite getting back to baseline since he had covid in March. Arden sometimes requires oxygen overnight still. It also seems that his secretions are still thick compared to what they used to be, and often there will be bits of yellow that we are suctioning up. However, when I brought this up, Arden’s doctor was not concerned, and he said that as long as his oxygen requirements are not increasing, then we have no cause for concern. That was a relief. During this visit, they also did Arden’s “two-year checkup,” and he got weighed and measured. He’s now 12.5kg (27.88lbs), so he’s in the 50th percentile for weight, and at just over 80cm tall, he’s in the 15th percentile for height. For a kid who came home tracking below the 3rd percentile for weight, he has come a long way! Most of Arden’s doctors have been commenting on how “chunky” he is lately, but we’re happy to see that he’s a healthy, plump little dude! 

Scoliosis Update

The orthopedic surgeon we saw during this trip had never actually met Arden in person, only on x-ray imaging, so we were glad to finally be going in so that he could give us an in-person evaluation of Arden’s spine and his scoliosis. This was the first time that Arden got x-rays on his spine sitting up instead of laying down, so his curve was definitely more pronounced. Arden’s scoliosis currently measures at a 40 degree curve, which is considered “severe” scoliosis. However, his spine is not like many cases of scoliosis. Instead of curving in an “S” shape, Arden’s spine curves like a “C.” It is also flexible, in the sense that if we reposition him, or adjust his posture using our hands, we can move his spine almost back to a neutral (straight) position. At this time, there is no surgical intervention that would be beneficial for Arden’s spine, because he is too young. 

Sometimes with children as young as Arden, one of the interventions that they use is to cast the entire midsection of the body, from the chest down to the tailbone. However, Brodi and I advocated for Arden and resisted this intervention. We know that he already has a restrictive chest wall that makes it hard for him to breathe (and that’s why he is on a ventilator). Adding a cast would only make that harder for him, and would be an absolutely miserable way to live. He would be unable to bathe or even take it off for breaks. With that in mind, Brodi suggested that we try a form of bracing to help correct Arden’s positioning, and the orthopedic surgeon agreed. 

Arden is Getting a New Brace

Luckily, the orthotist was still in the surgical clinic at the Stollery, and she was able to do a cast moulding on Arden right then so that she can begin making the custom brace right away. It should be ready in about 3 weeks, so when we return to the city next month for Arden’s ptosis correction surgery, we will try to coordinate the brace fitting during that same trip. 

The brace will not “fix” Arden’s scoliosis, but rather, correct his position so that he can build muscles, stability, and functional movement on both sides of his body. If you have ever seen Arden butt scoot around the house, he often uses his right hand to assist in his movement, because he leans farther that way due to his scoliosis. We are hoping that the brace will correct his positioning, and therefore help him to utilise both sides of his body. 

An Unfortunate Turn of Events

Everything during this trip went surprisingly smoothly… and if you don’t know why that’s surprising, you may need to catch up on a few other posts about how things usually go during our medical trips (haha!). However, when we got back to the car, I couldn’t find Arden’s toy bag. When we packed up the car, I had asked Brodi to put it near my seat so that I could easily reach it for Arden while we were driving. He knew exactly where he had put it, and it wasn’t there. We quickly deciphered that it had been stolen out of our vehicle. There were no signs of forced entry, so we figured that somehow the van must have gotten unlocked (potentially the key fob got bumped in a pocket or something). If it was just toys, we wouldn’t have been so concerned. However, the bag contained the iPad that Arden uses for his communication program, and the audio player that we had purchased him for his birthday. So it was an expensive loss to say the least! 

We will have to look into purchasing a new iPad for Arden so that he can continue to learn how to speak using the LAMP Words for Life communication app. On the way down to Edmonton, he figured out (with some assistance) how to say “I love you, dad,” and it was the sweetest moment ever! 

May Long Weekend

Following our busy week we had an absolutely amazing May long weekend filled with all kinds of fun. Brodi and I each got to go golfing with friends, we took Arden to the driving range, and on lots of side-by-side rides and other outdoor adventures. I got to attend an Oilers game with Brodi’s sisters and a friend. Arden spent lots of time playing with his grandparents. We went on walks and visited the greenhouse. It was truly so fulfilling, and a great reminder that busy times can always be followed by times of relaxation and rejuvenation. 

Until next time,

XO Rayel