So it has now been 6 months since Abby gained any weight. She is growing taller... since none of her pants are long enough. Unfortunately she is looking thinner and thinner. The endocrinologist is satisfied that this is just how her body wants to grow. For the most part we don't worry about it since she eats adequately and her diet is quite varied. That being said I do worry (somewhere in my brain) that she is getting all of the nourishment she needs. I think any Mom of a tiny tot worries about that.
It is something I will bring up with the neurogeneticist next month but because small stature is part of RS I am guessing it won't be of huge concern.
Guess in some respects it works for us. She can't always walk so having her be so tiny makes it so much easier for us to carry her or put her in the stroller. If we are walking outdoors she still fits nicely in the big backpack carrier. If she was 38 pounds (instead of almost 28) there would be no way my back could handle it.
I guess it is all part of "The Plan". :D