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!
Various Ramblings of a Nostalgic Italian 
Sending you love and prayers my friend. It’s always better to know early if there’s a problem that can be resolved
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Thank you so very much
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😍
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Wishing you and your family all the best in this challenging time, Keith. You’re all in my thoughts and I’ll be sending lots of strength across the ocean for your son. I only know him through the pictures and stories on your blog, but he seems to be quite the fighter and full of energy, taking all of these hospital appointments in his stride. I fully understand that it’s much harder for you and your wife to wait for results when you simply want to know what’s up. You guys are doing a terrific job keeping your heads above water.
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Thank you so much, my friend!
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absolutely, and your being proactive is the best thing you can do for him, and for all of you. it is always better to be proactive, and gain more information, than to worry and wonder without answers. my heart is with you all
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Much appreciated, Beth!
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Sure will, Keith, prayers for him and you and Sam too. Good that you are indeed proactive and that the doctors are so thorough, chances are it is nothing big… kids develop at different rates with speech capability and all… but best to leave no rock unturned.
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Thanks, Dave! The doc is pretty sure it isn’t some of the things I mentioned, but she has to rule them out first to get where we need to get.
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I can’t imagine what you’re going through but I do believe talking and writing about things can help at the very least your own mental health. Andrew seems like a strong little boy and you and Sam great parents. Keeping you all in my thoughts.
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Thanks, Randy! He really is a strong one and I think that will be a big factor as we move on no matter what we find out.
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Not knowing is so stressful, that I can understand the way you feel. Fortunately, you have some medical professionals that are on the ball and hopefully will figure this out sooner rather than later. I will keep you all in my prayers, especially for a speedy diagnosis. Sending healing vibes to Andrew. 🙏💖🤗
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Thank you so much, Carla! We have complete faith in these doctors. We naturally hope that it is nothing, but the waiting is enough to drive us insane.
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Dear Keith,
I’m writing this as a mother who has been in your shoes.
It’s a helpless feeling not knowing what to do for our kids when something goes wrong. Our minds are preoccupied with a thousand thoughts when the doctors come up empty handed or, worse, with news we don’t want to hear. The not knowing can be as bad as the knowing, the waiting for answers seems interminable. From everything I have read here tonight, you and Sam and Andrew’s team of doctors are doing all the right things. Still, you want answers and you want them to be good, manageable answers. In the case of my son, we were originally given devastating news, the “cry yourself to sleep every night” type of news. We refused to accept it or give up. Today, my son is a healthy man living a full and flourishing life with a wife and child. Never give up, trust your doctors, trust in God and just as important, trust your gut. You and your family are in my prayers. I have also placed Andrew’s name on our community prayer list. A lot of people you don’t know are praying for your little guy right now. And believe me – the power of prayer is an incredible force.
Blessings always – Nancy
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My dear friend,
I thank you so very much for your comment. I truly hope you know how much this means to me and my family.
Your comment is exactly why I decided to share what was going on. I am a firm believer in the power of prayer. I thank you for sharing with fellow prayer warriors. I will thank God for them tonight and the nights that follow.
My faith keeps me strong. I know that with God all things are possible.
As I lay my head on the pillow tonight, I will count you and the others who have commented here as the blessings that you are.
Thank you again. Keith
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Take care.
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