School's OUT!!!

Today is the last day of school for the kids. Gracie was up at 6:15 am by herself....why can't she do that everyday? She was ready to leave 10 minutes early...she needs to "get there early enough to get a yearbook". We didn't get the order in on time in the fall so now she has to hope she gets one. Last year she missed it.
She found out that she made choir for next year but there's a catch. If the class is full then she has to try out again in the fall. You'd think they'd have a waiting list but I guess not. The director was going to ask the schedulers to see if there is room so she'll know before school gets out but they haven't said yet.
Boo has no idea it's the last day-though I did tell him. I'm sure he doesn't really understand that he's leaving Miss Sarah's class and moving into kindergarten in the fall. That means most of his preschool classmates will go into regular classrooms and he's going into lifeskills. I do know that there are many of the kids who will be in & out of the class throughout the day for different subjects so he will still see them. He will also still go with them to the "specials" classes (art, music, gym, library).
Summer is looking long already though I am looking forward to the break. Boo will have therapy on alternate Monday's @ St. V's and 6 sessions for school throughout the summer. We are continuing respite too so I have some time that I don't hear "we have a diaper emergency-come change him" or "Boo needs his medicines" or "time to feed Boo-are you going to make him wait?" OK, enough boys and girls....there is a clear schedule on the fridge so everyone knows when he needs to eat, when to get his meds, and the minimum times to check his undies for a change. I love my family but I'm not the only one who can care for this child; not to mention I shouldn't be the only one since his pappa is still laid off and sissy is more than able to change a wet bum. Now if I can just get them to understand that respite is "complete care for Boo" so they get a break too. Not that they really want anyone to come in but they don't want to do it either. Hmmmmm, I'm still not "SuperMom" even though I try.
I agreed to cut respite to 1 day a week from 10-3 for June. DH is due to return to work in July (I hope!!!) so I may go back to 2 days a week then. I plan to use 1 day to spend completely with Gracie and 1 day to sew. Cleaning can be done on the other days. :-p
My shop is nearly empty so I reminded/told everyone that if the door to my sewing room is shut and I'm in it then I'm "at work" and to LEAVE ME ALONE!
Money is tight and I can't get anything done and posted to help supplement if I can't get the time.
OK, enough whining. DH wants to go for a bike ride and I need the exercise so we're going while both kids are at school. We've got about 45 minutes before Boo gets home so I've got to get my bum out of this chair.
Have a great week!

Blended diet...finally getting some real support

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!

Blended diet again

Well we've been working into more blended foods for the last few days and Boo is finally starting to perk up. I also found out about a blended formula. It's called Compleat and is from Nestle now. It's one of those formulas that either works well for you or not at all. I think we're gonna try it though. It's made from real food rather than sugar water with powdered milk and a multivitamin. It's got to be better that what we're doing now. I really just want it for when I can't use the blended stuff (when we're out or I'm sick). I understand that we'll probably need a different kind of pump because it's pretty thick. I don't use the pump much and more but we need if for when Daddy or my parent need to do the feeds. It makes it much easier for them to be sure to get the right amounts in him. I'm still looking into our options but I really want the "sugar water" stuff out of our lives. I mean really, would you feed your typical child nothing but sugar water and a multi-vitamin? I know I wouldn't so why should a medically fragile child, who needs the best nutrition to be healthy, have to live on that stuff? Nikolas is also working on oral feeds as well so this just makes sense. I can do his oral stuff then blend it down more to go through the tube. Viola-healthy & happy little man!
Have a great weekend everyone!