Post Surgery Update

I apologize for not posting a dedicated blog to an update on my son. Many blogger friends have reached out and asked how he is doing after surgery a week or so ago.

We are blessed that he didn’t need to be in surgery very long. They had booked the operating room for 4 hours, due to the “possibility” of other surgeries, but he did not need them. This was good news mostly, but there are now other questions. From my wife’s social media post:

Surgery went amazing. You would never know this kid had anything done. He bounced back fairly fast and is eating and drinking like a champ now. But surgery left a TON of questions and opened up new concerns. Andrew has severe sleep apnea as well as a speech delay, which we have always blamed on the laryngeal cleft and his Laryngomalacia. Both of which are still there, but surgery revealed they are not the cause of the obstruction like we were thinking. We have an appointment at the end of September with neurology to start looking at different things.

Some of the stuff we are witnessing is really leaving us scratching our heads. In speaking to the neurologist, some speech delay or speech regression could be neurological in nature. There is also some concern about muscle tone loss in some areas. We’re working with PT on that.

He’s been a toe-walker for a very long time and that can cause future problems. So this week, he received his braces. Both feet go in them and he needs oversized shoes so the braces fit in them. He wears them off and on for a couple hours and as the days progress, he’ll eventually be wearing them all day. This will help him stop toe walking and with those lower calf muscles.

He continues to have non stop energy and leaves mom and dad exhausted at the end of each day. He has come up with creative ways to climb up to counter tops, turn on and off lights, and destroy anything in his path. He is our little firecracker!

We will continue with his speech therapy and physical therapy and hopefully he’ll keep making progress. We are praying that the neurologist will provide further answers.

Thanks for keeping him in your thoughts and for sending positive messages our way.