well, Lillian is tolerating them well. She is completely off of formula and four days ago she startled me coming out of her room. It is the first time in over 10 years she has been able to get out of bed on her own...with nothing connected to her. I know it doesn't sound like much, but it was very profound to me. It felt so momentous. (didn't cry, but I wanted to) I'm still trying to get used to it.
Now, I've done several different home blends and basically, after researching..I am just using the USDA guidelines for what she should be getting each day minus the dairy plus a lot more good oils. It is time consuming and i'm still trying to get accustomed to using the vitamix, it is very powerful, but I'm finding I am trying to do too much at once or something. I've tried very hard to find videos of folks doing a home blended diet, but most of what I've found are just doing a lot less than I am. I try to do two days worth of meals at at time.Still trying to find a routine...it's not easy and it adds another level of stuff to the day.
The other little glitch, well...that stuff is just down right hard to push through the tube and multiple times we have just exploded it all over the ceiling, walls, all over us...today, fresh out of my shower, I exploded 10 mls and it went on the ceiling and proceeded to plop all into my hair. As I cleaned up the mess, I became tearful...thinking of the future...our hope is that Lillian will eat by mouth eventually, but it gets me to wondering as we age, how on earth will we keep up with pushing that food through a tube...most often times I have a pounding headache when I'm done because of the effort it takes. Then, I think, I love her, I will do whatever is necessary for her, but gosh it's just a hard walk. I realize there are people walking harder roads and there are parents who have lost. I have perspective...but it is not easy.
So here's a little picture walk of what these feedings look like...