I got a really interesting call from Kara at St. Vincent. She's one of the nutritionists and very sweet. Apparently they had a donation of Compleat and Dr. S. told her to call us. They offered it to me for free, I just needed to come get it. We get it from insurance so we told them to offer it to another family but during the conversation we started talking about the blended diet and how I'm using it with Boo. Dr S told me to "go for it". The nutritionists and other docs (all but 1 is OK with it) had no idea how to so they just told me to go to the food pyramid.gov site and create my recipes. That was NO HELP. I was still so confused. I knew what I wanted to do but not how to do it safely.
Well there was no way I could afford a Vitamix even with the discount and I couldn't find any recipes to get me started. I broke down and bought the Homemade Blended Diet book but it's pretty technical and only has a few recipes. I still get a lot from the book (probably only because of my education) so I refer to it a lot but the typical "lay person" won't get much for it and it's $45 bucks-save your money. The yahoo Blended Diet group is a HUGE help but I really wanted someone to walk me through getting started. A year later I re-started this and we're doing great.
Anyway back to the nutritionist...she began asking me about what we were doing and I told her & said that I was glad they were starting to support us more. She asked what I meant and I explained that when I've asked before (over the last 18+ mths) I just was told to go to the gov web site and email or fax my recipes. I really wanted someone to work with me and walk me through the first few recipes then I could just follow up as needed. She apologized for the lack of support and told me that there are several families who want to do this. We had a really nice talk and I now have nutritionist support as needed. All I need to do is let Dr S know and we'll get an appointment set up.
I'm just glad that "adequate" is no longer good enough. Commercial formula's like Nutren Jr, Pediasure, Resource and the rest are "adequate" but honestly, would you feed your "typical" child only that? Then why is it OK to feed our medically fragile kids that full time? I understand that for some people it's really the best option and I don't fault them. For me though, I don't see any reason to.
I do use Compleat sometimes and it is really convenient for when we travel. I just find that I feel like a better mom by giving Boo real food thru his tube instead of sugar water with some powdered milk and a multivitamin. Besides I have been able to stop using any medicines to make/help his bowels move and we are probably going to stop his prilosec later this summer since he's no longer having reflux issues. Stopping 3 medicines and being able to lower his seizure medicines is awesome but the biggest plus is when you take them to the pediatrician and everyone in the office asks what you're doing differently because he looks so HEALTHY. Ummm...real food will do that for you. ;) Besides it really is a lot easier than I thought and only takes a few minutes. I usually do it while I'm fixing lunch or dinner for the rest of us...ta da the next day's meals for him are done. It's actually faster than fixing ours most of the time.
Have a great evening all!
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