We're Home!

Rachel graduated after only 4 weeks at the feeding program. I am shocked! I thought that surely we would be one of the families who had to stay for additional time. But Rachel progressed very well and met all of her feeding goals. While she is not eating table food on her own yet, like I had hoped, she is eating 3 meals a day of 1/2 pureed, 1/2 mashed foods. She also eats 5 bites of soft chewables before each meal.

I wasn't sure how we would do at home. I thought we might revert to our old ways of battling before each session. To my surprise, Rachel never fights the feedings. She may comment that she doesn't like what she is served, but she always eats all of it. It helps a lot that the protocol developed by the feeding team remains for every meal. She knows what to expect, what is expected of her, and when the meal will be finished. It takes the fear of the unknown out of the process. And once we overcome her fear of large pieces of food, we will be moving right along.

While we were at the program, a local news channel filmed us and our friends to spotlight the clinic. Using the link below, check out my little movie star. Just click on the video for Feeding Disorders.

http://njn.net/newspublicaffairs/healthreports/

Moving right along...

YEAH! We started on soft chewables today. They are giving Rachel 5 pieces of soft food (puffs, french toast, cracker pieces) before each meal now. She's doing awesome! She actually does better with the pieces than with some of the mashed foods. But she also had a light bulb moment this morning...or maybe it was yesterday - the days all blend together. She was eating something mashed and she swallowed it quickly. She looked at me and said, "Mom, I don't even have to chew it." YES - that's what we have been trying to get her to realize for a week. She has been so afraid of the texture of mashed foods that she felt she had to chew it for a few minutes to be able to swallow it. And she was wearing herself out doing that. Now that she realizes it's OK to swallow small pieces of food whole, she can progress through the meal without getting tired. And the experts are willing to add more volume and the next level of food (soft chewables) to her routine. BIG STEP!!!!!

New Information

I was talking to Rachel's physical therapist this morning. She explained something to me that makes perfect sense, something I never thought about before that may explain some of the difficulty we are experiencing. Rachel's shoulders (her shoulder girdle) are rounded forward. I assume this may be a result of compensating after the surgeries, or maybe because of the discomfort of reflux for all that time. In any case, her shoulder girdle is abnormally shaped. And her tongue is attached to her shoulder girdle - just as it is in the rest of us! So if her shoulder girdle protrudes forward, that means her tongue retracts back because it's connected. And if her tongue is not in a normal position, it would make sense that she needs to move it more or use more effort to get it into the correct position for eating. WOW! Eating is so much more complicated than I ever thought. I hope that with more therapy and more exposure we can help her use less effort to get the food swallowed.