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!
(Some are making less than that, or trying to make it off unemployment!)
Various Ramblings of a Nostalgic Italian 