Tuesday, May 3, 2011

Sometimes You Just Don't Get What You Expect...

...and other times you get more. In our life right now we are seeing this in two distinctly different things that are working out so very well together.

We didn't expect that as John got better and stronger and well just more John every day that our calendars would get more and more full, it's not doctors appointments now, it's Cub Scout meetings and hikes and such, Sunday School that now needs to be done more than ever, power wheel chair soccer coming up fast and while we thought we would put off school until the fall, and we will most of it, but some little things have got to be added in just to give the boy some more stuff to do. This is fun, and crazy and wild and we like it :)

The other thing we didn't expect was that we would change diets and make a major discovery that would start to make everything better and more doable. Mark and I have both been just feeling run down and achy and tired since coming home from the hospital and so after listening to our friends talk about diet stuff and reading some more ourselves we decided to give up all grains, legumes and sugar for 30 days to see if we would start feeling better. We are. What we didn't expect was what it would do for Mark. His stomach hurts less and less by the day and at times not at all. From everything we've read now it looks like Mark probably is allergic or intolerant of wheat/gluten stuff and the stomach/gut ache he's had his entire life is from that. You can hear how much better he feels in his voice and see it in all the things that get done around here and in just how much happier he is. So we are learning to make pancakes out of almond flour, eat lots of veggies even for breakfast and do all kinds of other cooking we would have never thought of even 2 weeks ago.

In both of these our lives have changed a lot, and all for the better even if there is adjusting to do!


X said...

I make pancakes with eggs, almond meal, whey protein powder (vanilla) and coconut flour. Not bad! Sugar free syrup to top it off. I went no grain, no sugar, no potatoes for all of Lent and then some. My daughter has fructose malabsorption and I think she is also lactose intolerant. Oh, and we quit the pediasure and went to a concoction of (latcase treated) milk, MCT oil, Flax oil and whey protien. So far so good.

Gina said...

I really liked the almond flour pancakes, and want to try more combos, your's sounds good! Oh I love that you got your daughter off Pediasure. John is currently transitioning from Elecare to Nutramen and I would eventually like to pull him off all commercial formulas and do something, blend real food, combine real food to make a formula, I'm not sure yet, just positive that I want him off things that start with sugar and soy and onto better fats and calories in general.

X said...

I wanted to try raw milk, but our nephrologist really put his foot down. Too risky for HUS when her kidneys are already goofy.

I think the mass produced meal-in-a-can stuff has it's place - when the benefits outweigh the risks. The manufacturers don't care about the health concerns that come with consuming soy, corn maltodextrin, sucrose and oxidated seed oils and stuff like that. I think that is a huge shame. It's like they do the bare minimum for health.

Blending real food doesn't work very well, I must say. But maybe you have a larger french than we do. My daughter eats, just not well enough, and her meds taste NASTY. It's too much volume for oral administration. Will John ever eat by mouth?

I'm glad to see he is doing so well!

Gina said...

I'm not sure that any of our doctors would be okay with raw milk, positive a few of them would not be. John doesn't really drink milk though as even with the new gut he gets really gassy with just a few tastes of ice cream. I'm not sure what we will move him to, still figuring out our end of it for the moment.

He does eat a very little by mouth, often times only 1 or 2 bites in a few days. Somewhere along the road very early on there was some neurological damage that caused his tongue to not function correctly. He cannot lift it to the roof of his mouth, nor move it from side to side and has to tip his head back to use gravity to move even liquids to the back of his mouth to swallow them. He is really only adept at eating something about the consistency of baby food and has no real interest in that at all, and who could blame him.

He is currently taking all of his meds by mouth, including swallowing a very tiny capsule whole, we were quite impressed with that. He is on g-tube feeds at night and I certainly agree that there is a place and time for commercial formulas, he would not be here without them. As they transition him to less broken down formulas he is doing better each time, less outputs, sleeping better and such. It gives me hope that moving him to real food, even blended, at some point will work. I think he will have his g-tube for life, I just don't see it going away, but I've been wrong about other stuff too.

We have a book - Homemade Blended Formula Handbook - that I have not started to get into yet, I want to, but there keeps being one more thing that need doing.

We are so blessed that he is doing so very well, each day it's like waking up to a dream come true :)