The Kendall Blog: Stuff...

Kendall had a cold this week and when she is sick, she has a tough time handling food, sleep or anything else for that matter. We have to keep her off solids almost completely as her coughing and gagging becomes too much for her with any texture in her mouth. The good news is that she has been taking more of her formula by mouth versus through the feeding tube. She's not too happy about it, but she seems to be accepting the bottle when she is conscious versus only when she is falling asleep. We're working hard on getting her to understand that being hungry can be quenched by eating solids or taking a bottle. Once she gets this concept, her wanting more food will be a natural occurrence and we can start weaning her off the feeding tube. Until then, we are working on only using the feeding tube while she is being fed through her mouth so that she associates the feeling of being full with eating and swallowing.

She has also taken a liking to drinking out of a cup. At the one year mark, she should be taking a sippy cup by herself, but we're happy she is grabbing the concept of drinking from a glass.

She is still way behind developmentally. We're working on her sitting and balancing on her own, applying open hand pressure to items, holding her own weight either by hand or legs, and so much more. Her 4 therapy sessions/week give her so many tasks to work on that it is nearly impossible for us to keep up with her activities. Her scheduled homework has to be worked on after her food has settled and before her next meal. These time slots are short windows of time and we are trying to take advantage of this every chance we can get. Overall, we are very happy with her therapists. They have become a part of our life and have taking a liking to Kendall. They really seem to care about her and have been going beyond the 1 hour slot they are with us each week to make it a more positive experience for all of us.