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.

Tuesday, December 30, 2014

Wrapping up 2014

It has been a good year.


Abby's world moves very, very slow. It is the small things that truly count around here.

With the positive news on her kidneys, I think it has truly renewed our vigor to keep moving forward seeking answers and better yet, solutions.


Like everyone else we have a lot of goals for 2015 and if we manage even 1 or 2? We will come out ahead.


For 2015 we are working on "operation exercise'. Now, before you start visualizing marathons, speed walking,and the gym ,I need to explain we define "exercise" much differently around here. Abby did receive a treadmill to kick things off. Part of Abby's daily ritual's include a lot of pacing around the house, and we are always curious exactly how much walking she is accomplishing, so if she does her pacing on a treadmill she and I can figure that out. We have already run into a few issues. With Abby she has a lot less tone in her upper body and even at her healthiest when she walks she has never really swung/moved her arms while doing it. As a baby/toddler she was never able to catch herself with her arms when she tumbled or fell.No crawling or pulling herself up. For years we would have to place her on her feet before she hit the ground walking. I remember finding her patiently sitting in a hallway or her room waiting for someone to set her on her feet. As she got older it seemed to not be an issue, but with the treadmill it clearly is an issue. On the treadmill that means she has to hang on while she walks. Now, if you have used a treadmill you know that when you walk at a slower pace and hang on you end up using a different set of muscles and might actually fatigue more quickly then a nice pace while arms are free and moving. Abby is brilliant at developing compensation methods and the treadmill has exposed a glaring one. So, one of our goals is to figure out "how" to get those arms to join in while she walks. Sounds simple enough, but I suspect after a lifetime of learning to walk and balance exceptionally well without them, it is going to be a big challenge! Going for therapy isn't an option. She rarely leaves the house and there is simply no telling when she will have a day where she feels well enough to even get dressed. Thankfully, there are some great resources online that ought to get us pointed in the right direction without risking a major flare/reaction/germs.

Exercise also includes the hula hoop. You know how they say that each person has a special gift? Well the hula is Abby's. Like a duck to water, when she steps into that hula it is like magic. It defies gravity. She can talk, walk and keep that shiny pink loop defying gravity without a wrinkle in her brow or a drop of sweat. When she pulls it out, she has our attention! Best entertainment ever and I still have no idea how she does it! :-) So those loosey goosey joints and poor muscle tone have provided a gift. It is pure magic. So, we need to try to figure out how to get that hula to provide more of a workout for her upper body. Her worst muscle tone issues are her torso, shoulders,arms,neck.

Starting to wonder if some youtube lessons in belly dancing would be beneficial- why not?

Folding laundry. Reaching to put glasses on the shelf. Picking up dog toys(my poodles make 2 year olds look tidy!). We consider all of these very good forms of exercise for Abby on good days. Extending her arms and using her upper body are definitely area's that she struggles with as far as endurance.

Then on the bad days? Pulling back her covers on her bed. Brushing her teeth. Climbing into bed. Letting me wash her hair- are all heavy duty forms of exercise for her when she is at her worst. All things most of us do without even thinking.

So, this year we will track what she is able to do on good days, and on bad days. See if we can add a few new tricks in that might help her strengthen her body up some.

As far as Project Elimination? Well, this last few months have been brutal. Abby lost sooo many of her foods. She is down to just peaches for a fruit(I did put some up in the freezer this past year thankfully). She still can do most root veggies but not much green. We lost "spicy" and she lost her red peppers and all peppers. Carob which was iffy is an official fail. On a positive she has hung on to her grains, and most proteins so not all was lost. This year we will have to try to reintroduce some of these foods, she has to have some of them in order to improve/maintain her nutritional gains. I am leaning heavily on herbs(fresh and even dried herbs have a shockingly good nutritional profile)for now and hoping as winter ends(in Houston come Feb spring will be setting in)and spring starts we can either find more "new" to her foods or try some of the ones we lost this past year. Overall, compared to many she still has quite a spread of foods which helps prevent me from panicking.

As far as her array of oddball issues? Toenails are looking pretty good right now. Her feet look pretty good in general. The weird rashes seem to come and go (the hickey like ones). Our best guess would be heparin release from Mast cells, since nothing more alarming has turned up in blood work. This past month or so she has had a few issues with patches of numbness on her legs, neck and face. They seem to be resolving on their own which means I am not going to fret about it. Hoping it was just her spine pinching something(we have a lot of spine issues in my family). Over the past couple years we have noted she gets what we call a "pet hive" on her face. Just 1 hive and it comes up in the same spot every time. Usually just this time of year. Oddest thing. This year it changed locations. Last year on her cheek, this year on her temple. It seems to come and go at random and come spring/summer it will disappear. Her hair while isn't thickening much hasn't got any thinner and actually did a little growing, another positive. She has had growing issues with her bladder and we are watching closely wondering at what point we should opt to see if we can find more answers. Since she tolerates no medicines or supplements we find going to the Dr. to simply confirm there is a problem and no way to treat it is a epic waste of her energy, our pocketbook and the Drs. time. Not too mention at least 1 out of 2 Drs. don't believe she reacts to everything and tend to get either pushy or argue. Somehow about half of Drs. usually just assume patients are clueless, dramatic, lazy,and insist on torturing Abby to prove to them that yes, when she says she reacts to EVERYTHING she isn't kidding. Not worth the risk unless we know her life is in definitive danger. Speaking of definitive danger, her oxygen desats are becoming fewer and fewer. Since the SubQ fiasco it has been an issue. Definitely still experiencing drops, but not as bad. Before she ran a nice steady 98 or better most of the time, now we are happy with 96 or better. She and I talked about seeing a specialist when she was dropping into the low 80's and occasional high 70 but again, her body has opted to self correct- good. She does keep an eye on it though. Sometimes when we think something has resolved, it hasn't.

Hopefully this year we will find more definitive answers to "why" she reacts to medicines and vitamins/supplements. Even better if we can find a way to get around it. On one hand, over the past couple years I have been shocked to learn that the medicine we take to fix a problem can often cause another set of equally troubling health problems. On the other hand, sometimes you just have to take one. Considering the various health issues she deals with,the fact that Abby has managed for years now without any medicines is remarkable. Our biggest worry is if she were to get a major infection- what would we do? If we can get past that this year I think both Abby and I would feel relieved.

My gut still says the Mitochondrial Depletion is a secondary issue as are the kidneys. Maybe this will be the year we figure out the Primary!

I have a good feeling about 2015! If we move forward even a little bit this year? It will be another successful year.

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