WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, October 10, 2012

Small Improvements

Abby is still showing tiny little improvements. These days they are not the huge leaps and bounds that kept us on this journey, but if you look closely you can find the improvements each week.

The bad flares don't last as long. Instead of knocking her down for 2 weeks, it is just a couple days. Far fewer bad flares as well. Lots of little bad days, but those are soooo much easier to deal with.. We are rewarded with a good day now and then, but often the reward is stability- well, I will take that too!

There have been many days that this journey has been hard. Yesterday my sciatica was acting up and my poodles have been waking me up at 3 am, I soooooo did not want to cook for Abby. But I did. She has days where she so doesn't want to eat, but she does.

Her hair is growing back in at a nice rate, we are both very happy about that! Her toenails and finger nails look good. Her energy is still poor, but this month she has had more good days where she is up and moving around the house, helping with cooking or helping with dishes. To us a very big deal.

Knock on wood the introduction to the homemade coconut yogurt and all it's good bacteria has been working without a hitch! We both delight in her "hearing" her stomach make noise instead of dead silence. The sourdough has sat well. We are hoping that it will make it easier for her digest food properly and get more of the minerals, and vitamins to digest- at least it hasn't made her sick! :-)

I have a few new foods on the list and lined up for Abby. Day before yesterday she and I were giddy over her lunch. She had a fat sandwich(gf bread) of chicken,lettuce and ranch(coconut sour cream and coconut yogurt,onion,dill and parsley). A blueberry gf sourdough muffin and a serving of red grapes- that was the most complete and normal meal to date in nearly a year! We have figured out how to make enough foods safe now that she can have a balanced and appealing meal. Success.

As the noticeable progress gets much slower and harder to notice, the journey gets harder. When she has a few bad days in a row, it sends us into panic that what we are doing isn't working. Somedays I wonder if what we are trying is right,after all most Mito families aren't doing it this way. Then, she does something like showers on her own, or picks up her own clothes, and we swear to work harder. This is working. I have met a few other families in the last few months that are finding stability doing it this way, and I delight in watching the progress in their kiddo's too. Mito needs a very individualized approach. For some with Mito they thrive running errands,school etc. Some thrive with PT,OT,Speech.. Some like Abby need less to do more. You must be strong and pick what works for you and yours and stick to it despite judgement within this community. There is no one right way in life, and in Mito who knows what will work? When you find the right path, run with it!

Teff flour is up on our try list next. Similar value to millet,quinoa,wheat- a very high value flour to bake with, and you can just boil the grain like millet or quinoa and eat it. Let the food trial begin!


Reagan Leigh said...

I went on this ridiculously healthy diet once (didn't lose a pound) but I ate a lot of quinoa and millet! I'm sure I have a few recipes that you could make palatable!

Diane said...

That would be great! Should be here tomorrow or the next day, and I have no idea what in the world I will do with it :-) I am sure I can come up with something, but the question is; would that something taste good? :-)

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