Update on a long wait.

Since February is heart awareness month, an update on Evynn is in order.  Evynn is currently still waiting on the heart transplant list.  Being that she was doing well she has been waiting at home, Evynn has been passed by when hearts have come available.
Evynn had been doing amazing since we started homemade puree feeds through her g-tube.  She has gained weight, going from being in the 3rd percentile to the 15 percentile.  She was feeling strong enough to stand and dance without holding onto something and attempt taking steps on her own.  She managed to take 17 steps consecutively!  She has her first appointment with Grandview Children's Center this week for a speech consultation.
Lately, Evynn has been more tired and does not have the energy to practice walking.  She has been vomiting randomly, she stats have gone down to 75%-76%, more cyanotic, and more irritable.  She has an appointment this week at SickKids to see if we can figure out if we can find solutions.