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, November 15, 2013

Season's Change, as does Abby

The IVIg fiasco seemed to cause a bunch of changes in Abby, so the theory that it might "reset" her was reasonably accurate.


However, like the seasons, some changes I would rather not see.


The good: She can eat SALMON!! This HUGE, amazing, terrific, delightful, essential. Salmon has B, D, Omega's - really for what Abby struggles with there are very few foods that could be as perfect as Salmon as an ideal food for Abby.


The good: The energy level is higher. I am calling this good because fatigue and lack of energy is "bad." The increase in energy is great and not so great. Her "mind" is more awake and wants to do more, but so far her body is not really wanting to join in :-) This can get frustrating and hard to handle. We are trying to roll with it, and hope her little muscles will join in and take the hint and catch up. There are days the increase borders on OCD and then days where there seems to be no increase.. It causes her to not be able to sleep for more then a couple hours at a time which is hard on her. Yet, when she is awake? She is plugged in, more herself, just more alive.. So we are calling this "good." Just need to find a balance.


The Bad: Dental work is not going so great.. she is reacting to more of the local's, more quickly and more severely. The reactions drag her down for days.


The Bad: Her body has decided it hates the resin tooth fillings. Anywhere the resin touches her gums, there is inflammation. This is a "new" thing so we have no idea if it is temporary, or something that is planning to stick around- we would like it to go away- sooner then later.

The Bad: The toenails had another little brown out- based on where the beau's lines lie, it was caused by the IVIg SubQ. There is some odd tissue around the cuticle which we think is more granuloma's. We keep hoping it will go away(did not last time, but hey, we are optimists)without anyone having to cut into her feet again.

The Bad: Before where she would often have building or delayed reactions, she is now immediate- instant, and worse with each exposure to the zillion things her body hates. On one hand this isn't entirely bad. IT makes it gobs easier to figure out what she is reacting to, but we have noted a lot more burning in her mouth and throat and instant racing heart and crazy BP reactions- which are bad. I am not sure she is more sensitive then she was before, more she is reacting more quickly and differently. It takes about the same amount of time to recover from an exposure still though.


Was the IVIg worth trying? Yes. Will we try again? Still uncertain about that. She see's the immunologist again next week and hopefully he will help us understand these changes and whether we should consider them "good" or "bad" in the whole big picture.


I love having Abby more present though. That foggy brain fatigue made her seem distant, more faded. I would rather have her present and irritated and annoyed her body won't keep up. After all, as I age I have experienced that fate myself, my head still says I can do everything I did 20 years ago, yet my body says, no thanks! :-) It is something I can understand and relate to, and share my new learned coping skills with her. It is a lot more "normal", and we like anything that is normal, even being cranky.


Despite our worries that we have lost a tiny bit of ground this year, change equals hope for us. The "reset" wasn't all good, but if she can be "reset" at all, well that is hopeful.

We are prepared for the holidays. Thanksgiving should be a food affair that rivals Martha Stewart's table. We have been planning for weeks-we find the challenge of not only subtituting safe ingredients entertaining, but making our Abby safe menu taste better then the original highly entertaining.

As 2014 approaches- we will embrace it with optimism. This summer was rough on us, and I admit, I was losing some hope. The improvements that food had brought were stopping. The constant state of allergic reactions were leaving her dull and sleepy. Nothing like a little adrenalin to keep us on our toes. The scary fever, the scary reactions have forced us to wake up and start thinking and problem solving again.



2014 might be the year we untangle the mystery of Abby- and we are ready for the hard work.

1 comments:

Jenna said...

Our internet has been down any my phone won't let me post for some reason. I wanted to say I love your holiday post!!! The things you are doing this year are awesome! I hope that you post a thanksgiving table post where we can see everything come together.
I am glad some areas are getting better. For us, fall has brought regression and usually fall is when we get a break. I hope that Abby continues to do better.

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