Lillian continues to struggle with the stretching I'm doing with her. The PT contacted the brace guy and asked him to increase the height on the SMO's we are getting for her. She also asked me today if I've ever thought of getting her botox injections. Well, let me tell you right now that scares the you know what out of me. I know lots of kids get them...but man that is just scary stuff. S.C.A.R.Y. to me. Going to have to consult her PED and pray on that an awful lot. We have an appointment with him Monday to discuss how to progress with her real food tube feedings. She's getting a half pack twice a day and she actually tolerated a whole package at once yesterday because we had a timing issue with another dental appointment. So, first...the day after I posted my last update, a sweet family contacted me and offered to provide a Vitamix for Lillian when we got to the point of needing one. Which brought me to complete tears (i know, hide your shock face) so so so incredibly grateful. This past Sunday I came home to find a very long time friend of mine had, unbeknownst to us, dropped off a new certified reconditioned Vitamix to us. I'm telling you friends, God is good good good. He didn't give us one, but TWO vitamixes...that's how I see it anyway. Really, I'm at a loss for words to describe the generosity that continues to pour out on us from others.
Second, Lillian had her fourth dental appointment and did relatively better. She only cried through about half the the exam. I mean she was still highly anxious and trying to scoot away from the hygienist (it's funny how she can move herself down a table so quick), but better than the past. Her appointment at Riley is in a couple weeks for her consult for fillings.
Still trying to find my footing in getting a new routine going on in the house. Feels like I'm just keeping my head above the waters. That is life though, isn't it? Ebb and flow.