Watching Gwendolyn

February 05, 2010 by Victoria We are a little concerned about Gwendolyn. We have been watching her closely for several weeks. Nothing major is happening, but whenever we notice any subtle changes our worry-meter goes off. She is not tolerating being off bipap for long, has been waking up crying in the night, and has had some tummy troubles...and there is just something not quite right. Her oxygen and heart rate levels are all fine though. My theory is that part of the lack of energy and tummy issues have to do with the manufacturer changing her formula slightly. In a healthy child, they probably wouldn't even notice because the ingredient changes are so slight. But for a child who has absolutely no variety in her diet, even just an increase in sugar can impact her ability to digest the food as well. And if children with SMA are using their energy to digest food, then they don't have energy to breathe. As the weeks have gone on, her tummy troubles seem to be resolving, so I think that played some part in what is going on. But, yesterday she woke up with very low energy and her eyes were all red. We took her to see her pediatrician just to be safe and the good news is she sounds really clear and there is nothing of enormous concern...but she is still a bit off. We aren't overly alarmed, but are just keeping a very close eye on Miss Munchkin!!! And just to throw us off completely -- Gwendolyn has also been having fits of the giggles over these last few weeks. It is so darn cute! It is amazing how laughter eases worry. More giggles please Gwendolyn

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