Monday, June 25, 2012

Things will change, soon.

It won't be long now until we have our diagnosis. I have spent literally dozens of hours pouring over Addison and Audrina's bloodwork, over and over and over. I have to say it, I'm angry. This isn't my job. I'm the mom. I'm no doctor. I don't want to be. But hours of research on medical journals, unscientific experience reading other parents blogs, and looking up other pediatric lab results.... things were missed. The ball was dropped time and time again for my sweet daughter. 

I don't think her regression needed to happen. Looking back, the symptoms she presented with from day one, the signs were all there and everyone chose to paint them into something 'normal'. They applied Occam's Razor over and over and over. Its probably just reflux. Probably a GI problem. Probably allergies. Must be Cystic Fibrosis, Hirschsprung's Disease, and a million other things they were 'sure' of. WRONG. WRONG. WRONG. And the testing never supported any of those... because they were not the answer. So many times they were wrong, that some of them were convinced that once it wasn't what they thought it was, it must not be anything at all.

It's nearly certain that Addison has a metabolic disorder. The evidence is overwhelming.
Which one? How to treat it? How do we protect her? 

The bottom line is harsh but true: Right now, today, NO ONE is actively doing anything for her. The best we've got is flying by the seat of our pants and taking away food on a whim, and guess what? Its already saved her life, and protected her brain. It's not enough. Because that doesn't give her any shot at a normal life one day. 

There were so many clues. SO many... that despite my being 'just a mom' and not having any medical knowledge, I'm still angry with myself for never considering this. 90% of the labwork done to test for these types of things were done when she was on Neocate and relatively healthy. So if she was not in metabolic crisis, her labs WOULD be normal. The labs from her September/October admission are full of clues....and not surprisingly that's when she began to get the sickest. When we started feeding her more and more table foods.

I'm appalled now, that this was never considered. I feel so cheated. Its as if our house was burning down and Addison is trapped inside it. Everyone's standing around trying to talk out the best way to save her and guess what? No one is actually going in to get her. And now Audrina! I fight and bring this child into the world, 10 weeks premature, only to watch our life fall apart AGAIN and have no one step up for us and figure it out. Permanent damage has been done to Addison's mind and body. I'm going to say it.... it's not going away! Stop trying to tell me she's going to be cured and magically going to just wake up and starting talking my ear off one day about the weather. She's improving, absolutely, but she's not the same, and I don't believe ever will be the same. 

I love her unconditionally and she's the most wonderful and amazing person you will ever have the opportunity to know. She will have an amazing life - I can guarantee that because I will see to it personally. But everyone who told us she was going to be 'fine' stole a little piece of her future, every time you made me believe I could trust a doctor with her life. With her future. When I thought, "Oh, they know better than I do", despite my gut instinct (and my husbands) screaming something is very wrong.... I failed her. 

And I will literally take her around the globe until someone helps us, because I will NOT let it happen to Audrina while they sit by and 'wait and see'. 

I wish I was ready to say what has lit a fire in us again... What I really want to do is scream it from the roof. I'm past being patient with doctors, being understanding that these things take time to figure out. There is a post I wrote in April of 2011 about waiting. And 15 months later, we are still waiting. For what? For things to get worse...? because I never put my foot down and said ENOUGH. 

I have just one simple job on this Earth, to protect my children. I failed Addison, despite my best efforts. No way I could have known at the time, but ultimately it is failure all the same. But I can protect Audrina. I can make sure no one lets her get that sick before they start paying attention, when it's already too late...

"Stand up, plead your case before the mountains; let the hills hear what you have to say." Micah 6:1


  1. Sending prayers your way.
    love, Kay Dillon Keck

  2. Have you all looked up eosinophilic conditions in children? I read the symptoms & a lot of them sound like Addison's symptoms. One is called eosinophilic gastroenteritis or (ED) the other is eosinophilic esophoitis. They are very rare & the only way to properly diagnosis it is to do a EGD & take a small biopsy to see if there's an abnormal abundance of eosinophils. I hope your girls can get a proper diagnosis soon, praying for your sweet family!!! -Dacey Rame Tulsa ok.

  3. Sounds like you are onto something real BIG.Your girls are so fortunate to have such great parents who care so much about them that they are willing to do anything and everything.
    Praying you find answers very soon.

  4. Youre doing a GREAT job mama. Hang in there, keep pushing for your answers and shout the loudest to anyone who will listen.