3.22.24 World Down Syndrome Day

 321… World Down syndrome day. I hope you all wear your crazy socks tomorrow. I thought it would be good to give an update at all things, Gabe.

Gabe’s spinal surgery recovery has been amazing. He did really well finishing up PT. We went to his six month post surgery appointment and the surgeon said he has a 10° curve. Normal is considered 10° or less. He’s very happy with how his spine looks and the success of the surgery. Gabe‘s posture is so much better and he seems more comfortable.

Gabe’s pronated ankles are continuing to be a problem. He’s always worn orthotics, but his ankles are rolling inward to the point where his arches are callousing and it looks so uncomfortable. He told us in the past that it hurts him. We’ve been doing intensive PT with daily stretching for over a year now. It has helped some. His heel cords are still so tight though. The orthopedic doctor we see is referring us to an ankle surgeon specialist this summer. She said the concern is that while now his orthotics do put it into correct alignment, as he gets older, his feet could get more stuck in that pronated position. As he gains weight and height, this can become more and more uncomfortable. We’re basically at a window where we need to decide what to do about it.  We’ll make an informed decision based on the specialist’s recommendations. If he did need cord release surgery, it would be eight weeks nonweightbearing. That’s hard to think about. We’ll see when the time comes. 

Gabe‘s heart looked great back in December. His echo and EKG were even improved some from last year. So thankful for that cardiac surgery team years ago.

At Gabe‘s last ENT appointment, his hearing test showed some deficiencies in his right ear when it comes to high-pitched sounds. He can still hear all language, but really high frequencies are hard for him. Hearing aids were mentioned. It’s not necessarily needed right now, but if it gets worse, it will be. He currently cannot hear birds chirp, water drip, or wind through the trees in his right ear. He may be getting a bit confused on where sound is coming from. This could potentially play into some feelings of anxiety or overwhelming when in a crowd and there’s lots of noise all around him and he can’t tell where it’s coming from. That makes me sad. He gets tested again in May so we’ll see what comes of it.

Gabe is having a pretty successful school year. He still has moments of refusals. He has long delays for processing time. He is improving though. He’s learning so much at school and following direction. It’s exciting to see him maturing. He’s doing chores as well and really doing well with nighttime routine showing us lots of independence. 

Gabe is signed up to do some exciting teenage things. He’ll be participating in special Olympics bocce ball coming up. We also enrolled him in and I can bike camp and a teen camp with the down syndrome association for the summer. We are trying to hit social skills hard and get him to use his strong voice when he’s out and about.

He’s a pretty amazing kid, with a lot of fight, some spunk, and a great deal of emotional intelligence. I ask you today to make a point to connect with someone who has Down syndrome. You’ll be better because of it.