Wow, I wrote this a year ago. I suppose I should write an update.
After the bad weight checks... The developmental pediatrician recommended her to a feeding clinic. It was a gastroenterologist with a dietitian and SLP feeding specialist on staff.
This referral was a God send. Prior to all this, other than weekly feeding therapy from Early intervention, I didn't have much support. At Charlie's first evaluation at the clinic by the doctor and staff, they noted that Charlie was not chewing, gagged on solids, and was on the wrong formula. Basically, despite being two she ate like an infant. Also discovered during that visit, was gastroparesis and slow motility.
I about cried with relief. Finally, someone understood why I was having such a miserable time feeding her. I wasn't crazy.
Anyhow, her formula was changed to something more appropriate (Peptamen JR). Her gastroparesis and slow motility was addressed with medication. Feeding became better than ever for her. Once on the proper formula, her weight gain was no longer a problem. The reflux and vomiting ceased.
Her forward progress has been painfully slow... but she's progressing. It took us about 8 months to get scheduled into an intensive feeding program this August. In those 8 months, she's improved enough that it's unnecessary. I just canceled her reservation (or whatever it's called) today.
The GI feeding clinic who really understood us and got everything rolling said, "Charlie will most likely eat when she's ready." at her most recent follow up last month. I agree with that statement. I feel like as long as we remove the obstacles (such as gastroparesis and MPA) and continue working on the sensory issues then she will get there in her own time.
She continues to be formula dependent but currently she is on a roll to where I hope her formula days are numbered.
Thanks for all the great ideas. I will be sure to try them.