Evynn is now 17 months old and has enjoyed the last couple of months at home. She thinks she is so funny climbing the stairs when she knows she shouldn't. She had another sedated echo which showed no change, her valve is still leaking and still needs a heart transplant, but she is stable and growing. Evynn is still to weak to learn how to stand or walk but that doesn't stop her from getting around. She finally had her g-tube size changed, which means we are now experimenting with homemade purees. This has been a lot of trial and error. It has required careful analysis of all the nutrition in common foods to maintain her high calorie diet. She has been tolerating a higher volume of food in each feed, which has allowed her to be free from the tube & pump for more of her day. Her SickKids team is happy with her stability right now (things can in an instant).
We ask again for thoughts and prayers for another little friend waiting at SickKids for a heart as well... she is not doing as well...
