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. Lennon 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 Lennon has another hyper-ammonia 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 Lennon’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 still go through the motions of really funny to whiney and cranky – to temper tantrum from hell – but they have gotten better. Now I just need to learn to breathe during the times he is well.
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
Thanks!!!