One moment and one day at a time

We have been home one week without going to the Emergency room or being hospitalized. This is good, but I still feel like I cannot breathe and relax. L looks really good, his personality is back – the sassy, funny little guy who keeps you on your toes. And yet, I am filled with anxiety that I will wake up, or get a call at work telling me that L has another hyperammonia episode.
But I must admit, it has been nice to be home on my days off, and come home from work and know that he is doing ok. A good indication for L’s ammonia levels is his pupils and this morning they were normal – if is ammonia levels are elevated his pupils will get big – at times they will cover the entire Iris and pupil is all you see. His behavior has leveled out some – but we stil go through the motions of really funny to whiney and cranky – to tempertantrum from hell – but they have gotten better. Now I just need to learn to breathe during the times he is well.

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2 thoughts on “One moment and one day at a time

  1. Thank you for sharing your son’s story. I’ve been following your blog since you posted on the yahoo group. Our 5 year old daughter has OTC. Here’s hoping the quiet time continues, you all deserve a break.Take care,Kim

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