Update: Arden’s October 21/21 Appointments

Yesterday we were in Edmonton for two of Arden’s appointments. We traveled down the night before, stayed the night, attended the appointments, and then drove home yesterday afternoon. Needless to say it was a lot of hours in the car in a short time, but as usual, our little Arden handled it all pretty well! 

First we visited Arden’s pediatrician where he got his 18 month check up (he’ll be 18 months on October 29!). Arden’s doctor didn’t have a lot of comments to make, because he’s happy with how Arden is doing. 

His weight/growth looks good lately at 9.79kg (21.6lbs), and he’s been doing great with his cuff down during the day. In fact, Arden was happy to show off the full range of his voice when his doctor attempted to inspect his ears and mouth! (haha) Arden’s pediatrician exclaimed, “He’s got a great voice with that trach! Holy sh*t!” Arden’s doctor is a little bit old school, and it’s one of the reasons we love him so much. He tells it like it is, and he isn’t afraid to express himself. 

He was also impressed that Arden is tolerating his 15 minute off-vent trials, and suggested that if he’s doing that well at 15 minutes, we could probably push him up to 30 minutes. Knowing me, I’ll definitely work Arden up to this slowly, because pushing him too hard too fast worries me! (In the past, we’ve often had professionals say he’s ready for something, and then he throws us a curveball and backtracks because it was too much too soon). But it’s really great to know that the people following Arden have confidence in his progress! 

After that we visited the orthopedic surgeon that works with Arden’s feet/ankles/knees/etc. Arden’s right foot seems to have turned slightly outward again, and we were worried that the surgery he had in July to correct his vertical talus may have to be redone. The surgeon said he remains “cautiously optimistic” about it, because upon inspection, it would seem that the joints in the foot are still moving as a unit like they should be. 

At the end of November, Arden will have an MRI of the lumbar spine. He has a low-lying conus, and it’s important to watch the spinal cord as he grows to ensure that it does not become tethered in place. During this MRI, the orthopedic surgeon will ask that they also look at the blood vessels and nerves in Arden’s knees. 

At present, Arden’s knees do not extend to full range of motion, meaning that they cannot straighten. For now, we will focus on Arden’s feet and ankles. The boots and bar braces that he is currently using will be worn 24/7 for another 2 months. After that, he will need to wear them during sleep times for another 9 months. Next year, the orthopedic surgeon will likely perform a larger surgery on Arden’s knees that will help him to be able to extend them in/out of a straight position. 

During both appointments, Arden was not impressed by his doctors trying to touch him (haha) but when they were a safe distance away, he was more than happy to perform all of the tricks he knows, including lots of his ASL signs. 

Arden’s team continues to be impressed with his progress and development. It gives us a lot of hope and happiness to see his boisterous little personality coming out at every turn, despite the obstacles that he faces physically. Arden’s mind and body seem determined to progress through all challenges. His orthopedic surgeon made the comment that a lot of Arden’s joints don’t seem like those of a typical child with Escobar Syndrome (Multiple Pterygium Syndrome). I know that a lot of that is just how the cards fell into place genetically. But there’s also a small part of me that sees Arden’s determination to use his body in functional ways, and I know that his sense of perseverance has and will continue to help him achieve his mobility goals. 

Another positive progress report for our amazing Arden!

XO, Rayel