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.

Saturday, May 31, 2014

And It Begins....(Again)

At least that is the way it feels.


After a bit of rescheduling on our part Abby is seeing a new Dr.


Long story short we have always felt the depletion is a secondary issue. Call it gut instinct, call it she simply doesn't fit the Mito picture, call it denial, but at the end of the day she despite lots of little issues is pretty darn healthy for a 19 year old with a depletion- so then, what is the primary? I would love to say that all of my extreme efforts are the reason she is doing so much better then you would expect, but if that was the case many Mito patients would do a lot better. So she has to have something else going on either her very own blend or something that has been missed.

For a patient it is VERY important to know what is primary and what is secondary. We now know that most diseases can cause Mito dysfunction. The treatment protocols will be different. You don't want to treat the wrong disease.

This new Dr. may or may not bring the answer, but hopefully at least some more clues. I have a lot of feelings about Drs, and most pretty conflicted. I am finally growing up enough now to understand that it is not fair of me to expect them to know everything, no one does.


Abby has had a lot of bad experiences, but really a lot of good Drs too.


After years of this I feel like we all have to kind of pump ourselves up to handle a new approach with new Drs. You organize your records(well I don't but I try to make sure they are all together) you print off pictures of oddball behavior,rashes, etc. You sleuth the internet trying to see if there are patient comments about the new Dr. You figure they sleuthed you too so I know they are hopefully prepared for my stinky cheese self.


Hopefully, Abby feels up to steering this appointment. Usually Abby doesn't say much. Mostly because by the time we get anywhere she is using all of her energy to hold herself together. Sometimes she does but over the years kind of felt it was pointless. Of course I tend to bulldoze, we call it the mighty data dump, I feel the need to tell each Dr EVERYTHING.. I always hope that if I list all the crazy and weird symptoms from over the years that eventually a Dr. will hear it and have a "Bingo!" moment. Clearly that has not happened so I am making an effort to only give the headlines from the early years, and hopefully Abby will be up to covering the last 10 years.


Part of me is so hopeful that this Dr. will figure it out. That their perspective is on track. More then that, if they don't figure it out, will they be willing to keep hunting? Even Abby's best Drs. seem to hit a point where they cannot help anymore. Where they won't/can't keep flipping stones. I get it, I know they each have only so much training, but each time we hit the end of the road with a Dr. it is like we free fall until we can find another to flip some more stones. There are days when I wake up and it is like I am on a beach and for as far as the eye can see there are millions of rocks to flip and until I find one with her name on it, I need to keep flipping. Somedays it is disheartening, who could possibly flip all those stones? Then other days I feel lucky like today will be the day that I flip the right stone and get the answers we have been hunting for the last 19 years.

Realistically? The odds of finding something treatable are slim. Even worse the odds are getting slimmer that we ever pinpoint what makes Abby's body so unique. I just need to know. Abby just needs to know. In so many ways she is so lucky. Whatever this turns out to be it hasn't affected her brain, on the other hand having a healthy brain trapped in a body that won't cooperate with her brain is frustrating.

My gut says to keep looking. My gut says if we can just figure out a little more I can either help her maintain better or possibly improve enough or understand enough to help her live more fully. There will always be that hope that whatever is wrong is something a single pill, or a new diet could possibly treat her and make her better. I would probably feel less disheartened after various appointments if I would accept that may not happen but if I don't stay hopeful, who will? She is worth far more then just accepting a prognosis that only brings heartache.

Am I too invested? I note a lot of other families seem to see a lot fewer Drs before accepting a rough diagnosis,and some just even 1(gasp!)and accept rare and devastating diagnosis's- I cannot fathom doing that.. maybe I am the crazy one for opting to fight tooth and nail vs acceptance. Maybe I am nuts for raising my family to focus on the weakest before focusing on their own lives. We all put Abby's needs above our own. Without Sara with Abby so much, life would be so much more isolating for Abby. Sara is truly Abby's best friend. If Abby cannot go somewhere none of us go. We are like a family Marines- No Man Left Behind.

A lot of our friends have busy social lives. They travel now(when they have adult children) they are active outside the home in many activities they enjoy. If Abby could have that too? I think we would do more. The thought of her being left out and forced to cope with the alienation brought on by bad health is just wrong. Maybe that is why Derek and I keep hunting and keep trying to figure it all out, if we figure out Abby it benefits all of us. At the same time, we have benefitted from our "No Man Left Behind" approach. Our lives are incredibly rich. We have a bond between the 4 of us that is unbreakable. The friends we do have that accept that we live the way we do for Abby are better friends then I ever thought I would have in my life. We make it work. We will keep making it work. Fact is if it is a progressive disorder our choice to focus on her will be twice as valuable. We will have been able to enjoy every single moment, with no regrets that we left her behind to live our own lives. That makes the practice of flipping stones far more rewarding and right.

So it begins, we are on the hunt again. All the Drs she has seen have offered very important findings, all those little pieces of the picture will eventually allow a Dr. to see the big picture.

At around noon today Sara will turn 22. Each of their birthday sends me down memory lane, through the years from their beginning and mine. They were both so very different. Sara born a little shy of 30 weeks and Abby at 42 weeks. Sara I swear came early because she is just too far ahead of the rest of us, I am guessing the womb was a very boring place. At 6 months she was speaking and by 2 she was reading, she has always moved forward at lightening speeds. She amazes me. From correcting my awful grammar to fixing my computer she is rare and unique and I pinch myself often wondering how lucky we are to have her. When she was little I remember being sad that she seemed to not need me. I know now she did need me, but differently. I needed to kick in doors for her so she could move even faster! She still needed me though just differently then Abby. Abby did not want out of the womb and was the opposite in all ways to Sara. She was more then happy to stay close to me, she did not need to be in the middle of something to learn, she was the wise owl from my arms. I have no idea when she started reading. I remember walking by her room before she turned 4 and heard her reading aloud, but she would not do it front of me, I swear she knew that I savored those hours reading aloud to her and in her unusually wise ways figured it was better to keep her reading to herself. She doesn't chase life like Sara but she waits for it to come to her. 22 years ago when that tiny tiny Sara came into this world I could have never ever guessed that I was going to be the lucky Mom to have such unique and gifted daughters. Derek and I tell the girls all the time, without them we would have nothing.

So, turning a new page, another birthday passes for Sara and a New Dr. for Abby- a new adventure for another year.

Feeling more centered this time around. Actually, feeling quite fortunate for once. Maybe I am not as stinky as I used to be! :-)

As it begins hopefully I will remember the lessons I have finally learned and even better perhaps this might be the missing piece to the puzzle.

I cannot wait to flip that final stone.

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