Today I find myself in a very mellow, almost wounded mood. My spirit is a bit sunk in. I'm discouraged, uncertain and feeling a bit raw and vulnerable.
I'm writing this just minutes after making a chocolate avocado mousse for the wildboys and they were quite verbal about how they did not like it. I liked it. Perhaps it was too sweet. Perhaps I should use cocoa powder instead of the bakers cocoa blocks that you melt. My avocado did not "whip" in the food processor. Instead, it pureed, which gave the pudding a grainy texture. Much to the wildboys displeasure.
It frustrates me to no end to try out new recipes using alternative ingredients and have the whole thing flunk. I just want to make better choices for my family and get the nutrients and vitamins in them and take the bad stuff out. Failed recipes are a waste of time, money and they generate dishes in the sink. They would love it if I whipped up a batch of instant pudding and slapped that in front of them, but I wanted them to eat the healthy fats found in avocado!
We saw Dr. Veda Friday. The visit went well except he asked me how I was feeding Dylan, to which I responded truthfully that he is mostly gluten free, but it's hard to consistently cook/feed him that way so it's about 50/50 right now. He told us that at Dylan's last lumbar puncture, his spinal fluid showed elevated levels of PDH. PDH is an enzyme that processes the carbs that we eat. With correct levels, our bodies can process carbohydrates normally. With elevated levels, you would have to restrict carbohydrates and sugar.
I just don't know a lot about this right now. I've been reading about it some, but honestly, it's not easy to understand. If I had a PhD, I probably could. But even my advanced google skills are failing me. All I know, until we see the genetics doctor after Thanksgiving, is that Dylan needs to eat low carb/low sugar/no sugar. That isn't even confirmed that he has something that would need those restrictions, not until genetics confirms it. But once confirmed, Dylan will have to eat that way probably the rest of his life... or continue getting sick. Sounds like an "easy" fix, doesn't it? Well, lots of things sound easy, but just aren't that simple. Dylan is 8 years old. He has enjoyed a wide variety of healthy and junk food in his 8 years. Just suddenly saying, "Hey Dylan, you know all those crackers and sandwiches and candy and cakes that you like? Well, you can't have them anymore. Sorry, dude." Trust me, I know what it's like to have restricted eating and being faced with events and family gatherings where there is maybe one thing there I can eat. It's extremely hard and sometimes makes me cry. And I'm 27 years old! Then, what about the other wildboys? Hayden and Jude won't be allowed to eat those types of foods around Dylan, as we won't keep them in the house. So will they develop some kind of complex about having to eat yucky stuff because of Dylan?
Obviously I'm still in the freak out stage.
Dylan is a big struggle in my life, and I've noticed he takes up a lot of my blog. I do have 2 other kids that are doted upon equally, but Dylan just takes up so much of my brain. I'm struggling to teach him to read, to feed him correctly... and honestly, he hasn't been very nice lately. Steroids don't bring out the best in anybody, and if your child is taking them, it won't bring out the best in you. I know he's just a kid, and doesn't mean to be rude...well- he does mean to be rude, but I know it's not coming from a hateful place in his heart, it's just the 'roid rage talking. But it's so hard to be patient with.
I know that his steroid treatments won't last forever (7 more weeks, god speed!!!!!!!!!!!) and one day we'll fall into a nice groove of eating well and being nice again. But until then... Boo.