I recently had a great conversation with one of Gracie's physical therapists that put things into perspective for me. We decided that Grace is more like a six month old developmentally, then she is a 14 month old. Really, Grace was so sick until after her second surgery in April that she didn't have energy or strength to focus on much more than healing her body.
We had an appointment with cardiology yesterday and Grace is doing relatively well---we just need to get her off of some of her diuretics, especially since they are keeping her from even being refereed to GI about placing a G-tube. So what we are planning on doing is weaning her off of her afternoon dose of bumex, if by the end of the week she responds with increase oxygen needs, coughing, etc. we will get her into the cath lab soon to coil off some more collagulants (enlarged veins and arteries). But if she responds well, then we will continue to wean off of her other diuretics.
Gracie is now 30 inches long and 15lbs, so she is still her long skinny self. Dr. Jou wants me to try increasing her calorie content again from 24 kcal, to 27 kcal. I honestly don't think she will tolerate it but who knows. I'm anxious to get a g-tube placed, I've heard that kiddos just gain more than with the NG tube.
Gracie is rolling all over the living room these days. Its fun to see her actually try to go and get something that she wants. And if she can't reach it, she will let us know. Grace has started vocalizing so much more now, she just says ahhhhhhhhhh, dahhhhhhhhh, ahhhhhhhh, dahhhhh over and over again. I love it! We are working so hard on mastering sitting, Grace hates it, but is doing quite well. So far she has sat up for two minutes straight before tumbling over.