sclero-what?

we love our life, every single ounce of it.

but recently, we have been thrown a couple curve balls, and we're learning to love those now.

several months ago, kyle started having these weird symptoms of swelling and stiffness in his extremities. (hands mostly). so that took us to the doctor, and they weren't real sure, but thought it was probably carpal tunnel.

so kyle started wearing wrist braces, and taking anti-inflammatory meds. nothing.

back to the doctor, which took us to a neurologist, who said yes, you have carpal tunnel, but it's caused by something else, and he didn't know what.

well, then his lower legs started swelling, back to the doctor.

then to a rheumatologist, and dermatologist, and anything else that ends in -gist.. and trying every kind of anti-inflammatory and antibiotic.

about a month or so ago, we finally got a diagnosis!

SCLERODERMA.

sclero-what? we put our degrees in google to work, and researched like nobody's business, trying to figure out what the heck we were dealing with.

not the best idea when you've just been given a rare diagnosis. it kinda scares the heebeegeebees out of you!

scleroderma is a rare auto-immune disease where there is an over production of collagen in the tissues in the body.

what does that mean? kyle's skin is becoming very thick and hard, which is immobilizing his joints. which stinks!

the downside with an upside?

it can get into all your organs, doing the same things to your heart, lungs, throat, etc. which really stinks!!

kyle has been through umpteen million tests (lots of needles involved. not kyle's fave), and it has been determined that it is not in any organs! PRAISE THE LORD!

the doctors are fairly certain that kyle has "limited scleroderma", which means it should stay in his skin, so we are praying daily, that is the case.

this is a "for the rest of his life" kinda thing, so there will be appointments from now on checking all those organs to make sure it hasn't spread.

so the treatment for scleroderma? well, that's the kicker. it's so rare, that people don't know how to treat it.

when we got the diagnosis, the doctor said, "you have scleroderma, and honestly, there's nothing really to do for it." awesome!

but, alas, we have found a way!

kyle is going through experimental treatments at southwestern medical school.

he is on several different medications, and he "tans" 3 times a week. yes, you read that right, he tans. it's not a traditional tanning bed, it's got different kinds of lights, but he is getting tanner as we speak! kinda funny. the lights are hopefully going to be able to "break down" the collagen.

he has to go to dallas to tan at 7 am, three times a week, which is lame and tiring, but if it works, it will be totally worth it!

and praise the Lord, we are not going to dallas several times a week for chemo, or something equally as terrible.

we are so tired of doctor appointments (especially kyle, i just tag along), but truly trying to be thankful that the diagnosis is not any worse, even if it does stink. like a lot.

God has a way of opening our eyes, to show that we are not in control. nor the perfectly healthy little family like we "think" we should be.

it's been a tiring journey, but we do rest in the fact that God is sovereign, and will not give us more than we can bear.

so yeah, we're doing well, and still loving this life. curve balls and all.

and because no post is complete without a picture.. here's kyle and jillie bean at one of the many appointments. yes, she tagged along to many appointments, because i want to be there, too! all the doctors know her well =) and she actually behaves quite well there, which makes it a lot easier!