Don't you think it is so very ironic that the new words Eliza Grace is learning are all the names of foods .... foods that she won't eat? Really, is someone trying to punish me? She can sign and say banana, cereal and cracker but if you try to get them near her you would think you were trying to dose her up with some arsenic. She also has this evil baby laugh when she signs "eat" ... I really think she is toying with me. Maybe she figures this is payback for me torturing her with trying to get her to eat? Or am I giving too much credit to the mind of a 20 pound two year old?
Since we came back to Saba I decided to revisit the idea of an intensive feeding clinic. After talking to more clinics than I care to count, I have discovered some interesting things. Not one clinic will actually give you any statistics on their "successes." To the extent that they claim "success" it means getting kids off of g-tube feeds, either completely or partially. Not one of the clinics could give me any idea of their success when asked how kids like Eliza do, who cannot chew and has a severe dysfunction of the oral phase of swallowing, coupled with sensory issues, behavioral issues and a palette that is as high as the Grand Canyon is deep). Really now, if these places, that charge about $8000 a week (or $96,000 for the full 12 week program), are the be all and end all of feeding disorders, then why are they so darn shy about reporting their success rates?. One clinic suggested they would only take Eliza if I had a g-tube put in her so they could stop all oral feeding and "start from scratch." Don't think we'll be going there anytime soon. My personal favorite was the clinic that mentioned, in passing, that they find force feeding to be successful in some cases. Not for us, thank you. I did ask the clinic that thought force feeding was nifty if they did any long term follow up to see if these kids developed eating disorders as teens or adults, and they couldn't answer that.
So for now we will stick with our daily feeding therapy where we try to get Eliza to eat by making the experience pleasant, and I figure I can find a better way to spend $96,000 to enrich Eliza's life (now of course I just need to work on winning the lottery to get that $96,000).
Here are a few random vacation photos: