Thursday, April 14, 2011

The Appointment That Shook Our World

So lately I've been thinking a lot about this whole blogging business and how we simply sometimes aren't 100% honest with one another. We like to 'paint our lives pretty', so to speak. And while normally I think there's little to nothing wrong with accentuating the positive and shoving the negative into the corner, there's simply not much I can do to put a positive spin on what went down yesterday. So instead, I just might do a little bit of shoving the negative in  your face. Please forgive me if I offend...it's certainly not my intention, but this momma has had enough.

Yesterday was the day of Lib's dreaded allergy testing.
And I did my best to make it as good as possible.

We started the day off with some shopping and togetherness.

I let her pick out her own outfit, complete with accessories (even though it wasn't exactly doin' it for me).

Photobucket

And then she got all tatted up (thanks again Pop for giving my kid enough tattoos to last a short lifetime).

Photobucket

And boy oh boy did she think she was tough stuff. Seriously.

Photobucket

We then had the most wonderful lunch from Five Guys (her choice) and sat outside (also her choice).

Photobucket

And then the meltdowns started.
Kristen joined us (which was great and much appreciated. I'd decided there was no way I was tackling this solo), and the Lib just wasn't feeling it. First she pitched a fit about a dress I bought her, the she pitched a fit because it was too sunny and was 'making her itch', then she pitched a fit because she couldn't find anything she wanted me to buy her (oh the agony), and then she pitched a fit because her earphones she uses for my I-pod weren't working because she'd chewed through the cord. Oh, you read that correctly; we are on earphones #5. (I realize I should probably stop buying them, but that's a post for another day.)
And all of this was pre-worst doctor's appointment to date.

Needless to say, the girl was in  a bad mood.
She was having a terrible day, which we all have now and then.

And then it got much, much worse.

We got to the doctor's office.
Lib put on the gown and settled in to wait on the exam table, I-pod in tow.

And then the nurse came in.....with the tray full of needles to prick Lib's back with for the allergy testing.

And I seriously thought Libby was going to climb the wall.
They could hear her in the waiting room, at the checkout counter, and God Bless anyone was waiting to see the doctor-- she probably scared them to death.

It took me and three other nurses to restrain her for the testing.
Sixty pricks, and she let out a blood curdling scream for each and every one.

It was seriously like something from a horror movie.

She was sobbing, I was sobbing. Poor Kristen didn't know WHAT to do.

And although the whole thing only lasted for about fifteen minutes, it felt like hours. Holding her down and telling we have to do this no matter what was easily one of the hardest things I've ever had to do.

And when it was all over, I told her I was proud of her.

"Why?" she said, "I wasn't brave at all."

I told her I was proud of her for being a girl who can say no and stand up for herself.
In all seriousness, my kid is a fighter.
This mom's not raising a doormat.

And bless her bones, she's just had enough.
This is the fourth round of allergy testing she's had in her little lifetime, not including the MAJOR blood allergy test we had done about two years ago. And the cystic fibrosis test. And the celiac test. And the immune deficiency test. She's endured over fifty prescriptions in the past four years and tried every lotion known to man. She had blood drawn less than a week ago and has had a thirty minute skin treatment routine twice a day for going on four years now.
 She's sick to death of dealing with her skin, and to be honest, so am I.

She's taken steroids that seriously cause her to eat more than a teenage boy, and here lately (since starting kindergarten) she's become very self-conscious of her skin. The things she says about 'never being beauitful' and 'never having soft, pretty skin' literally break my heart.

For most people, eczema is not that big of a deal.
They use some lotion (usually over the counter), change their soap, maybe change their detergent, and in a year or so, the child usually outgrows it.
That's simply not our situation.

And while I am nowhere near disillusioned into thinking that this is the worse thing that could happen to us, it is OUR situation, and to us, it is terrible.
I honestly have a new empathy for parents whose children have chronic medical conditions.
But I also have empathy for parents whose kids can't sleep because they itch all. night. long.
Lib's doctor estimates that she hasn't reached stage three sleep in six months or more.
And it's a normal occurrence for her to get up in the middle of the night needing a band-aid after she's scratched all the skin off of one of her fingers or toes.

So while eczema isn't the end of the world, it certainly is putting a major damper on ours.

Her doctor even told me yesterday to stop telling people she has eczema because they simply won't understand. He said to instead refer to it as atopic dermatitis, which is more of an allergy based eczema. And he refers to it simply as the itch that rashes. How true.

Long story short, yesterday was the stuff nightmares are made of, and I fully believe it took at least a year off of my life because it was just that stressful.
The worst part (other than the actual testing itself)?
We're no closer today to knowing what was wrong with her than we were yesterday.

Her allergy testing didn't reveal anything we don't already know.

So for now, we wait.
We continue using the meds. we've been using...the ones that kinda sorta work some of the time.
We get rid of our cat, and if at all possible, we move to a house that has no carpet (for fewer dust mites) and hasn't had a cat living in it for at least a year (that's how long it takes to fully remove cat dander. Nice, huh?).

So I have to ask: anyone want a four-year-old Calico cat that's now in need of a good home?

And does anyone want to buy our house?
Yes, I'm completely serious.
We'd move to an igloo if we thought it would help; we've reached the point of true desperation.

Needless to say that when all was said and done and we took Kristen back to her car and found that it wouldn't start, we really weren't surprised.
How fitting after the day we'd had.


Photobucket



In the meantime, we wait and we pray, pray, and pray some more.

Thank you to each and every one of you who have asked about Libby or thought of her or prayed for her. I am forever grateful and feel very blessed to have so many people who truly care about and love my little girl.
And don't for one second think I'm giving up--- whatever Lib's got going on and I are in for a show down one of these days....unfortunately just not anytime soon. But you'd better believe we aren't rolling over and giving in to whatever it is; we will keep hunting and we will keep searching until we get some answers.....even if it means an extended stay trip to the Jewish Institute of Eczema Research in Denver, which we're viewing as a last resort. And we're still about two steps away from last-resorting. And that alone is something to be thankful for, right?

And to every parent whose kid suffers from the beast that is atopic dermatitis, my heart goes out to you.

*Did I cover everything and answer all of your questions? I'm still in trauma recovery mode. If there's still something you want to know, please leave a comment, and I'll do my best to provide some answers.*

9 comments:

  1. D. has allergies and eczema too. Have you tried Almond milk? I had someone suggest taking him off dairy, all milk, and just giving him Almond milk. It seemed to work. I was told not soy or coconut, just Almond. It might be worth a try. I feel your pain. Hope it gets better. ♥ BJ

    ReplyDelete
  2. Bless her heart...and yours. I sure hope they figure something out, and fast.

    I'll keep Libby in my prayers

    ReplyDelete
  3. Bless yall! Jake has excema but nothing to her extreme but I have seen it. I know she is miserable! I will continue to pray for her! And for you, Lee, and Hollyn. It has to be tough on everyone!

    It looks like you have a "Let It Snow" day! :( Love you!

    ReplyDelete
  4. OH McCall - there's nothing to say here is there? prayers continued - can you inbox me the info on Sally? Is she fixed and declawed? shots? Mills hates other cats and has his claws but maybe I can help finding her a good home?

    ReplyDelete
  5. just praying sweet friend...love you

    ReplyDelete
  6. Don't know what to say - hugs and prayers for you and Libby.

    ReplyDelete
  7. Wowzers! Poor Libby. I really am praying hard that you find a cure. And don't ever feel bad about blogging a negative post. That's life and we all know how it feels to have a bad day.
    Much love and prayers, Mary

    ReplyDelete
  8. Wow. So sorry for you & Libby. I can't imagine going through that testing as a mom. Praying for answers, relief, a good home for your kitty, & a quick selling house. Big hug!!

    ReplyDelete
  9. Oh I am so sorry to hear about this! (new follower from Instagram) we are adopting a little boy who has insane food allergies and eczema. It is quite a fight. We had him tested, and he is allergic to peanuts, soy, and eggs. He tested negative for wheat and dairy, but if he has it his skin tells us that he is actually very sensitive to both. We have found that an amber necklace helps immensely with his rash-if I remove it he has a major flare. Also, a few others I know have use Hazelwood necklaces and they have cleared their children's skin amazingly. (hazelaid.com is where we get ours. The hazelwood only showed a slight improvement in our son, so we stick with Amber) I'm sure you've probably tries these already, but on the off chance you haven't I thought I'd mention it. I know it seems like a crazy idea, but it works for us, and I was ready to try anything!

    ReplyDelete

Cool people leave comments. Comments make me happy. You do the math.