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Showing posts from January, 2018

Using squirrel equipment and upping our blender game

Evie stands voluntarily now! The thing about having a toddler on a feeding tube is that they become more active, and burn off the calories you work so hard to put in to gain weight.   It used to be just using Pediasure formula to fatten her up when she was an infant, but it's more complex now. She actually weaned off eating with the iPad (whew!), but I wanted to show that she likes chocolate pudding! In the latest chapter in the saga of helping Evie to gain weight, we hit a plateau where we were giving her formula by tube and then feeding her pureed foods orally, but she was still growing at a slower rate than optimal.  At that point, the GI doc was concerned, and we could start seeing her ribs, despite adding oils and Duocal supplement to every meal.  We were so close to weaning her off formula, and then she started learning to walk and going to school to learn to be a big girl!  It felt like a step backwards to add back in more formula.  I was so discouraged, I coul

Evie's first day of school!

I didn't cry.  Everyone warned me I would cry, but I think I was too busy trying to unfold Evie's walker and help Erick with her wheelchair, and forgot to be emotional about dropping off Evie on her first day of preschool.   Evie didn't even notice that I left.  She saw kids playing with trains, and I plopped her down on the rug and left.  I kissed her goodbye and she didn't even blink.  She was too busy looking at the trains. The preschool coordinator came to meet us, and took over, and that was that.  We left our precious cargo in SCHOOL! One of the moms introduced herself in the hallway.  She said that her kids were told about Evie before she came, and they were all excited to have her there.  That meant so much to me. Evie actually has a Rifton chair that has a picture of her on the back so that other kids don't take her chair.  Rifton chairs provide more support for a kid who needs more support to sit for long periods of time. Evie's going to