Tuesday, August 2, 2016

What's a mama to think?

How's your summer going, friends?  Ours has been pretty low-key... and odd.  We're having a little fun, with some school (always, with the schooool,) library trips, ice cream eating, some bowling. . .


and tree climbing. . .  


and worm catching. . .

and waiting.
Lots of waiting for the unknown.


Some of you know that my little boy is sick.

We first suspected something was wrong way back in October, when he woke up one day and couldn't walk.  He screamed in pain with each attempt, crumpled on the floor and then refused to even try to walk.  After a couple of days, he was perfectly fine.  But then it happened again about a week later.  The daily rashes and mild fevers started creeping in, and then the constant reflux began. He has mild arthritis now.  It slows him down some mornings, but most mornings it doesn't.


He usually takes long naps in the afternoons because he's tired and has a low-grade fever and feels kinda cruddy.


His doctors say at least he doesn't have the high fevers because some kids do.  That's true. They also say he might outgrow this, but he might not.  He also might get better, but he might get worse.  That's true, too.


Every typical test and battery of tests have all come back negative or positive or whatever it is you would want them to say about your healthy child.  Even the rare and odd and quirky genome tests that cost thousands and thousands of dollars that the insurance companies shake their fists at and say are completely unnecessary all came back blank and normal and uninformative.  At least now we know more of what he doesn't have.

 nope.
more nope. 
so far, anyway.

We have no idea what's wrong with our little boy.  The specialists are leaning towards an autoinflammatory disease of some type.  That's as far as we've gotten.

same day of a really bad (and thankfully rare) day....  left: noon.  right: bedtime

The medicines we give him might as well be expensive air or sugar water that (again) makes insurance companies cry and complain and give me headaches but eventually they acquiesce and my little boy gets his medicine that may or may not help.  Every morning and every night I sigh and say a prayer as I give him a dose of something I hope doesn't make him sicker than he already is.


One doctor told me I worry too much.  One says I should be worried.
What's a mama to think?

I guess we'll know what we know when we know it.
Until then, I'll breathe and try to remember joy and to have some fun.
We need it.

(an example of his daily rash... not sun or exertion)


And I'll do my best.
To be his advocate.


So, all of this to say two things.

First, that we have more specialists, hospitals, guesses, tests, and doctors coming up very soon, and the little guy could sure use your prayers.
(Thanks in advance, my friends.)


And second, I had started writing this post a few days ago as a catch-up post, to let you know where I am, where we are, because it's been a while, and then this awareness-month-thing coincided, so I thought, "why not?"  So here we are. . . .

August is Autoinflammatory Awareness Month.  Because it's a relatively new classification of diseases, lots of research, community outreach and education is critical. Please drop by their website and facebook page to learn more.



Sooooo.... what have YOU been up to?  Please tell me about your summer... I'd love to hear of some regular, normal and FUN summer stuff!

Oh!  I have a tutorial written for you next week!  I think you'll like it.  It's simple and eco-friendly, and I just need to take a couple more photos for the tutorial, and then I'll be ready to hit the "publish" button.  See you next week!

P.S.  No gluten-free diet for Donovan anymore.  Doctor's orders.  And the kombucha doesn't seem to help him one way or the other.  But it is delicious, and we love it, so I'll keep brewing it.  So there's that little update.  But no more kombucha blog updates. (Thankfully, right?)  ;)

3 comments:

  1. Has he been evaluated for Chiari malformation? Prayers for you & yours...

    ReplyDelete
  2. Hi, Queen! :) No, he hasn't... but it certainly can't hurt to ask his docs. Thanks so much for your prayers! We truly appreciate them.

    ReplyDelete
  3. So sorry that you're on this journey of autoim/autoin with Donovan, but it sounds like you've got a good goal..

    "Until then, I'll breathe and try to remember joy and to have some fun. We need it."

    I wish I could to back and infuse a little more joy into the days of unknowing. It really is true that nothing is gained by worrying. Intentional joy on the other hand, can accomplish so much!

    You're doing the best you can. And it is enough. Prayers!

    ReplyDelete

I love hearing from you!