Tag: speech delay

Today, I’m a Worry Wart

I have posted this quote before, but it fits today (and hopefully will help). My grandfather once told me, “Worrying is like a rocking chair. It gives you something to do, but it doesn’t get you anywhere!” Despite the truth of that, I find my mind all over the place.

As you are aware, my youngest son recently had a second surgery for his laryngomalacia. He had a follow up visit with the ENT last week and the swelling was still there. The doc said that it should have been gone by now. They did a scope in the office and found that aside of the swelling, everything looked good.

The ENT then sent off a note to the pediatric sleep neurologist saying that he didn’t feel that Andrew’s apnea was something with his throat. He told her that he thought it might be something neurological. She thought that might be the case, too. Andrew actually had a visit with the pediatric neurologist this week. We walked away from that visit with more questions and some concerning possibilities.

He is already in speech because of the original delay. Now, he is dropping syllables in words, or changing them to a different letter. “Mommy” is now “monny.” “Daddy” is now “dah-eee.” The speech therapist had noticed that it seemed as though he was losing muscle tone in his face. The neurologist feels the same way.

It was a very long appointment. At one point, after reviewing the symptoms and giving him an exam, she said, “What am I missing?” She thought a bit more and presented the plan. We are at the point where we need to start ruling stuff out. There were many procedures ordered and we are going to be very busy.

He will have a 24 hour EEG, a brain MRI, generic blood workup, and yet another sleep study. The EEG will help rule out seizures. The brain MRI will help to rule out cerebral palsy. The sleep study will evaluate where his apnea is at and the possibility of another CPAP machine. The generic blood work is to rule out things like Fragile X syndrome and other possible genetic disorders. He will also see a specialist to rule out things like Muscular Dystrophy.

As a father, these things brought my stress levels sky high. Andrew has already been through so much. I don’t want to have to put him through any more, but we need to know what’s going on. Our neurologist applauded Sam and I for being proactive. Our medical backgrounds really made us question a lot, and she said that we are ahead of the game.

Sam keeps me balanced. I expressed my worries to her and she told me that we can’t worry about what we don’t know yet. There are a lot of possibilities, but until we have something to worry about, Sam and I will pray that all will be ok.

It helps me to write this down for a couple reasons. First, seeing it in front of me “gets it out.” Next, it allows me to fill folks in who are asking about what is going on. Finally, it allows me to expand the prayer chain. If you pray, can I ask that you keep this fine young man in yours?

Thanks in advance!

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.