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.

Friday, March 8, 2013

The 18th Year.

Abby's 18th birthday is just a few weeks away. Derek and I feel like we hit some imaginary finish line- both girls are "grown". :-)

Last week for the first time in 23 years we stayed away overnight from the girls- not just one night but 3 nights and 4 days in beautiful sunny Puerto Rico.

The hardest part was getting on the plane without them. We always have at least 1 with us, and on one hand I was terrified she would get sick while I was gone yet on the other hand it was such a thrill that she was old enough and well enough for us to leave her and her sister.

They did great! Of course I had doubled my cooking for the week preceding and our freezers are literally bursting at the seams, I had to make sure she had plenty to eat!

Once we got home the girls admitted that Abby within 24 hours of us leaving promptly had a major flare- like gaining 15 pounds of fluid in 2 days and feeling awful. Part of me was horrified I wasn't here, and the other part of me jumped for joy that they handled it beautifully- no panic, they dealt with it. Fact is, despite being frail Abby is grown up now. I am so grateful to have been given these two women as daughters and proud beyond words.

18 isn't going to magically change our lives. Or I hope it won't. We are one of those very lucky families where we love each other and get along perfectly. All of us are very content staying in a unit.

I have been thinking a lot lately about where we are at with Abby. Most days I still think we are missing something. More and more I am leaning toward that these flares are more related to anaphylaxis reaction(not all anaphylaxis responses affect the airway)which would easily explain why her kidneys "shut down" temporarily and why there is some scaring. It would also explain why when we removed all the allergens we could figure out, most of her issues with dysautonomia disappeared. The only time her BP has plummeted over the past year is when she ate something she turned out to be allergic to the food or med. Same with her racing heart-directly related to allergens 80 percent of the time. She still is crazy heat/cold sensitive so not a complete answer. But if that is the case, why is she still flaring? I feel like I have removed the sun and star's and still the flares. Granted, they are definitely more frequent this time of year which happens to be the worst time of year for tree allergies(which she has).. but, on the other hand I know a lot of people with some serious allergies and they aren't like Abby at all. Those thoughts lead me back to the Mast Activation disorders- but that world is less defined then the Mito world and most Drs. depend heavily on medications to treat their patients- so why travel that direction to say no thanks? Believe me, if Abby's body would accept a pill and it would do her good she would swallow them with joy- but even compounded her super sensitive body rejects medication like mad.

Abby is like a ball of tangled jewelry- the jewelry is too valuable to toss so you study and study the mass of chains hoping you tug on the right chain to unravel the whole knot- you tug on the wrong chain and the knots get worse.

This week I read a few publications about celiac and vitamin D being rare causes of severe myopathy. Celiac can cause serious symptoms and poor nutritional standing is not uncommon.

Then I go back to the fact that I have to admit that Abby was not a normal newborn/infant even in the womb and then I have to change my thinking.

Without gluten her gut is definitely happier. But not enough to blame just gluten. Admittedly her D level stinks. The D level is an interesting theory- when we moved to Texas from NY she suddenly got a lot more sun therapy. She slowly got better. Then we moved to Seattle and rapidly got worse. At first when we moved her back from Seattle, she did feel a bit better(was outside more) then got so sick and the allergens outside and temperatures have forced her to hide inside.... I don't know.

Getting her D up probably isn't going to make a huge difference, but I will take a tiny itty bitty improvement.

All the tiny improvements add up.

We have officially left the world of Pediatrics. I know there is less medical support for adults and we are grateful! We have found far more open minded thinking Drs. in the adult world then in Pediatrics. They all respect the fact that Abby knows what works and what doesn't and most are pretty pleased that we avoid medications like the plague. They appreciate that we are willing to try everything within in our power and become self educated on these odd diseases, in Pediatrics it is far more restrictive. They seem to get that Abby(and I) thrives looking for answers. Certainly a far more positive group of Drs and far more laid back. Much better approach for Abby.

Before project elimination we looked at the future with dread. The Pediatric specialists, the mito culture showed a future that was going to be darker not brighter. This year we are so excited to see what other improvements we can force out of Abby's reluctant body-

Based on the growing number of families finding that allergies aggravate their "Mito", I fully suspect that 20 years from now the Medical World will have enough "Evidence" to acknowledge that allergies play a significant role in the function of Mitochondria. We aren't planning to wait around for them though! :-)

I am confident we are many steps closer to understanding Abby's unique body. Each day we find safer and better ways to improve her health. Nothing like a healthy dose of optimism to start off her 18th year.


Circus of 6 said...

You and Derek are awesomely fabulous parents who are growing awesomely fabulous girls :)

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