Wednesday, August 31, 2011

So it actually is a big deal?

You know that feeling when you are going through your daily life routine, plugging along, surviving but kind of ignoring the big elephant in the room?  When you think you might be getting laid off, but are ignoring it?  When every sign points to your marriage ending soon, but you keep paying for marriage counseling?  That has been my life lately.  And Greg's.  We know something is wrong with Mia.  Everyone keeps saying so.  Add to that all the stress of the impending anaphylactic reaction she will eventually have and trying to prepare all of her caregivers and family members and prevent it at the same time.  And normal life crap.  Bills, medical bills, job changes.  But we are still in denial.  We see our girl, tall, solid, vibrant, an absolute joy.  She literally skips when she walks.  She has a smile that would melt the coldest of hearts.  She has a twisted sense of humor.  Just last night when I was bathing her and Tess, she couldn't understand why Tessa was sooooooo irritated that Mimi kept sticking her finger in (as T calls it) "her booty hole".  And she laughed furiously every time Tessa shrieked about it.

It's frustrating and hard to believe when professionals keep telling you something is wrong, but your eyes and sense of reason tell you differently.  I know families deal with shock differently.  But you usually hear about someone who gets a diagnosis, and suddenly all of the symptoms start to make sense.  Or a person has a symptom and the Drs can't figure the problem.  Not our case at all.  As far as we know, she doesn't have one single symptom.  I think I was choosing to believe my eyes instead of my medical bills.  I am still putting off her next blood draw, which was supposed to be done 2 weeks ago.  I don't want to hold her down so someone can stick needles into her, and listen to her scream.  For what?  More dead ends?  For a problem she doesn't seem to suffer from?  That's my reasoning.  My world is becoming unbalanced.  I am starting to sympathize with those people who don't take their kids to Drs, they just pray for things to get better.  Sometimes I wish I prayed.  But my issues with God are a subject for an entirely different post.

And I don't think that I am that far off base.

Does this look like someone who isn't healthy?  The kid can eat a double cheeseburger like a champ.  She lifts and carries things around twice her size.  She can run lap after lap around our kitchen island, for what seems like hours.  She can sing every word to You Are My Sunshine.  And she does so, every night.  She knows that if Mommy or Daddy leaves the house, they are most likely going to work.  She waits her turn to get her hair done, and she is smart enough to know whether Annabelle or Tess have had their turn and yells at them to get in line next.  She helps herself to water from the dispenser in our fridge.  She knows which iphone is mine, and which one is Greg's just by their covers and promptly rats us out if we are snooping on one another.

I had pretty much come to the conclusion that the Dr's were wrong.  They are only human too, right?  They can make mistakes.  Sure, her blood levels were high in the hospital.  I get it.  And when we followed up they were high again.  But they are coming down.  I guess it has been 5 months, and if I think about it, that is a long time to recover from whatever it is that caused it.  But then I had a bit of a shock.  While enrolling AB in school, I realized I needed a copy of her immunization records.  I went to The Vancouver Clinic and enrolled in their nifty new online MyClinic program.  Sweet.  From home you can access immunization records, lab reports, test results.  Later that evening I checked it all out.  Pulled up Mia's labs from the end of July.  I knew that they were still slightly out of range.  Around 90 for one of the liver function tests, when the top range was supposed to be 60.  But then I pulled May's labs.  The same test had a result of 723.  Holy cow.  More then 10 times the normal level?  That seems crazy.  I did the 1 thing any logical person would do.  I googled it.  Which let me tell you, never is a good idea.

The next day I went about my business.  Daily grind, but with a now larger, bigger monkey on my back.  By ignoring the issues, am I letting my baby get worse?  How damaged is her liver?  Why doesn't any of it make sense.  She's fine, right?  I am just a little neurotic.

Then we got her hospital records in the mail.

Sigh.  So, apparently my baby has a liver comparable to Lindsay Lohan's.   It is a big deal.  Something made her sick.  Really, really sick.  And I really, really wish I knew what it was.  Part of me wants it to be the nuts.  But that scares the crap out of me.  If eating 2 or 3 cashews gave her liver such a shock, will the next time be fatal?  Everyone keeps telling me allergic reactions get more severe each time.  Do I need to build her a little nut free bubble to roll through life in?  I will if I need to.  But I don't really want to.  Bedazzling and hot gluing feather boas to something that round and big is going to be a serious bitch.


  1. Doin' the "I don't pray" but "I'll do it my way" thing. Wish I could do more.