Thursday, February 5, 2015

When Your Kid Has A Thing, Part 2

Part One is here.

While I do agree that earlobes don't seem all that necessary, I still wanted my kid to have one. Call me selfish, but I just did.

Finally, we came across a doctor in NYC named Dr. Tirgan. He was an oncologist, yet he devoted his entire practice to the research and treatment of rare skin disorders, in particular keloid disorder. And after pouring over his research, stalking his website, and calling his clinic we decided that we were taking Mia to see him. Andy and I both just had this sense that his simple treatment made the most sense.

We sent our pediatrician his information and let him know this was who we wanted to see. He didn't take insurance and he was inconveniently (or conveniently, however you want to look at it) located in New York but, and hear me when I say this, I NO LONGER CARED ABOUT ANYTHING BUT MY KID'S EAR.

Hell hath no fury like a woman who can't get help for her kid.

Thankfully we decided to keep one more local appointment with a hand surgeon that our pediatrician suggested. We weren't too hopeful because, hand surgeon, but for some reason we went.

It turned out to be one of those moments where you know that the Lord had you right where he wanted you to be. This woman (Dr. Sylvia Gray at Mercy I35) was perfect for several reasons: a) she practiced for a year in Africa and saw keloids all the time, b) she trained in a completely different part of the country where she worked with many different ethnicities and saw keloids a lot (at this point if a doctor had seen one at all we felt like it was a lot), and c) she was more than willing to work with us and Dr. Tirgen in NYC.

I almost kissed her.

We contacted Dr. Tirgen in NYC and he suggested talking Dr. Gray through the procedure and letting her do it in OKC.

I almost kissed him through the phone.

And now, four (or is it five? I've lost track) procedures later, Mia is winning at this whole keloid thing!

The finished product (for now). 

We've now started compression therapy 20 out of 24 hours per day. She will most likely have to do this for a couple of years.
compression piece she sleeps in:
 her day-wear:

She doesn't love having "a thing." But you know what? She doesn't hate it either. It's her thing. She may as well enjoy it. It could possibly get her out of PE if she's desperate ("I should probably skip dodgeball today because, you know, the keloid.") and her compression earrings make for great conversation. Dr. Gray even found a lady on Etsy that will make fancy ones for special occasions. Bring on the bling!

Both Tirgan and Gray have warned us repeatedly that this is a long process. That Mia might have to have treatments well into her young adult years. That it could happen other places on her body. And this little girl just shrugs and starts talking about her latest Minecraft invention. 
I think our kids have a lot on us when it comes to accepting the curve balls that life sometimes throws. I have learned a lot through this process (which is minor and simple compared to what a lot of people face).

I think I need to be more childlike and less childish. I'm thinking Mia can teach me a lot about that.


Wa Wa Waughs said...

Wow, I have never even noticed! Hope that makes you feel better. I can totally relate after Dawson's 7 arm surgeries. I'll be praying that it doesn't make a reappearance.

ann said...

Mia is a champ. So are her parents! There is nothing that compares to the relief of matching up with the right doctors at the right time. Thank you for sharing- we all have our "things" in life, but many are too scared to talk about them.

Kayla said...

You are one beautiful young lady miss Mia!! Wes has a large keloid where his port was. Also, Avery took after me and was born with a pretty significant bunion on her foot. I also have pectus excavatum. Having "things" give you character! Keep rockin on girlfriend!!

Chellie said...

So glad you found a local doctor who can help. What a great kid! Hope your story does help another family.

OK Chick said...

You have one awesome daughter!

Wendy Simmons said...

Ya'll are raising a strong and confident daughter! I'm so sorry that Mia has a "thing" but how wonderful that her poise is shining through (once again). We all know that God and the Internet work in mysterious ways, so there's no telling who might be helped from who knows where by Mia deciding to share her story.

I loved your statement of choosing to be childlike, rather than childish. Such true words that I'll carry with me today.