diagnosis, please?!?...

It's been awhile since I (Amy) updated on our health journey, partially because of the emotional upheaval it involves trying to explain it, (as you'll soon see) and partially because there's not much progress occuring. I'm frustrated and confused. I'm ready for this to be OVER. I'm ready to run to the computer to tell you all: "We figured it out!" But that's not today. Nevertheless, here's the update:

When our local doctor suggested we look nationally for a specialist a few weeks ago, it felt like a huge hammer dropped out of the sky. I don't know why. It was totally the right call for her to make, and I appreciate a doctor who is honest with you when it is time to move on. But I have literally been feeling the pain of being a medical orphan, watching as my daughter's symptoms are worsening and wanting desperately for someone to please HELP us!!!

Okay, so here's the deal. After doing her research, my doctor gave me the names of two doctors (who are actually dermatologists) at the Mayo Clinic in Rocester, Minnesota. (I know.. Mayo Clinic, right? That's awesome!) One of the doctors doesn't see children. And on the other doctor's online bio, it says her special interests include "alopecia" and "auto-immune disorders." (Okay, hello!?! Is there any question who to see?) So I called to make an appointment with the 2nd doctor, and she is currently out on maternity leave until sometime in January, so we've been put on her waiting list to schedule an appointment for whenever she returns. (they couldn't schedule us because she didn't have a return date set) As great as Mayo sounds, thought, I gotta admit: I'd really like to figure this out without the need for 3 plane tickets to Minnesota, a rental car, a hotel room for 5 nights with a toddler, & the possibility of getting snowed-in in Minnesota in January...

So in the meantime, I scheduled a follow-up appointment with our pediatric gastroenterologist at Duke Children's for Tuesday. (they were the ones that did the extensive bloodwork & stool tests and discovered the parasite infection, but we haven't been back since.) I have several questions that I just honestly don't forsee this Duke doc being able to answer, but nevertheless, I need SOMEONE to help me!

Seriously. I just want someone to tell me what this IS!? May I have a diagnosis, please?!? Can doctors stop scratching their heads at me and get to WORK helping me?? Do I have to listen to one more doctor telling me to go see someone ELSE? Can anyone just look at my daughter as a WHOLE, and if not, go GET the doctor that can help understand what's going on! I need a team of doctors to ALL sit down at the SAME table and LISTEN! (which is a plus for the Mayo Clinic-- they pull in a team of doctors who spend endless hours with you in order to give you a diagnosis and then connect you to a doctor in your own area who can help with the on-going treatment)

Whew. Sorry for the venting. If you can't already tell, I'm frustrated. Someone said it best for me the other day: Tell me what to do and I'll DO it! I'll do whatever it takes. If I just knew what TO do! I mean, I'm hearing ALL kinds of advice from well-meaning folks about what they think I should do, but honestly- they don't know. So God pleeeeease direct me to someone who does.

Before the proverbial hammer dropped, we had already decided to take a supplement vacation. We were doing too many things at one time, and so we had no idea what might be causing what. We needed to see if we could tell what was helping, what could be hurting, etc. So we stopped the zinc. We stopped the probiotic. We stopped the digestive enzymes. We stopped being quite as strict about her diet. (though we are still gluten free & dairy free & low sugar. That's certainly not hurting anything to keep her immune system strong.) The only thing we've kept up is her multivitamin.

Don't know that we had any "ah-ha" revelations through doing that, except to see that it didn't appear to be any of those things contributing to the bad poops. (alright, stop reading here if you're the type that doesn't want to hear about my daughter's gastro issues...) :) The bad poops have continued on, even after a second round of treatment for the parasite which initially helped us to see firm poops quite consistently. (which are so rare around here.)

Interestingly enough, on the plane trip down to Texas for Thanksgiving, we gave her quite a bit of nuts to snack on-- walnuts. almonds. pecans. (we cut out peanuts a long time ago when it showed up as the highest delayed food intolerance on the IGG test-- which is different than what you would normally think of as a food allergy) But the poops became even WORSE and more frequent and MORE foul-smelling than ever! (didn't think that was possible...) Anyways, a quick decision to try to remove ALL nuts from her diet has given us perfect, firm poops for several straight days!

But can anyone PLEASE tell me why Caroline's skin (complexion, little "pimples" on face) is always worse when her poop gets better?! It's like this every time. She is supposed to have a beautiful olive complexion like she used to-- she is not supposed to be fair and pale!! (this is perhaps the most heartbreaking symptom to me, even more than the hair, because to me, it makes her look sick.) Can someone also please tell me why my daughter is continuing to lose areas of pigmentation on her legs?? The white patches (vitiligo?) have spread onto the front of her legs now, not just the back of them. Can anyone actually tell me why my daughter is bald??? Okay, so it's alopecia. I get that. But is there something missing (a deficiency of some kind) that's caused it?? It's now been a YEAR. That's 1/3 of her lifetime. Oh, it's too depressing to go there...

I just don't know anymore. For the past year, I've gone to doctor after doctor. I've tried everything in my power to help my daughter. I've researched and read countless amounts of information on health conditions. I'm tired of trying to figure it out. I can't. I don't know what is happening, and I don't like what is happening.

The questions nag me every day without ceasing. I constantly wonder how (and if) this will ever end. What does this eventually look like? What does she eventually look like? When do we get to the last page in this story where we read, "And then they figured out all along she was missing ______, so after they gave ______ to her, and she lived happily ever after..." How and when does this story end? And what happens in the in-between?

Pardon my venting. I was originally going to just post the facts, but as you can see, the facts are not without feeling. But I know my God is big enough to handle all of my anger, all of my questions, all of my fear, and all of my tears. He wouldn't have included the book of Psalms in the Bible if He wasn't. Dear friends, would you please keep praying that He will guide us to the help we need and give us peace and strength to trust in Him in the meantime? I will update you all after our appt. next week.

potential future career paths #15...

It's been too long. And in the meantime, I've been workin' up some pretty mad skills to prepare for whatever my future vocation may be... Will I be:


the next American idol?


Or a professional photographer?


(yes, my Mamie got me my first REAL digital camera and I am in HEAVEN taking photos! Maybe soon I can show you guys MY pictures!)


How about a professional chess tournament player?


Better yet, I think I could be an aerobics instructor!


I love the outdoors, so perhaps I'll be a rockclimber on the side.


As a native Texan, I gotta be a cowgirl, right?


Maybe my smarts will pay off & I'll be a senator or the first female president and get to drive around in one of these all the time...


Hmmm... what about this one? Now it's YOUR turn! Let's hear some of your guesses & we'll pick a winner!

the ripple effect...

I'm pretty convinced there is nothing better than campus ministry. (I'd maybe even arm wrestle you over it.) I know of very few other vocations that get the privilege of reaching into people's lives at such a monumental, life-shaping time and then after a few short years, they are sent out to the uttermost parts of the earth to (hopefully) continue the work of the Kingdom in all sorts of vocational callings and geographical locations! While it can sometimes be frustrating, exhausting, and heart-breaking in the short-term, it is overwhelmingly rewarding in the long term.

We constantly have to remind ourselves that campus ministry isn't a short-term endeavor. Though it certainly feels like we only have a few short years to labor alongside these students as they face incredible challenges, pressures, and temptations, it's easy to forget about the long haul. (it's probably the same way in parenting, I'd guess...)

But we've always said the success of RUF (Reformed University Fellowship, our campus ministry) is not something we can look at in one semester, or even one year. We'll know in 5, 10, or 15 years when we see what kinds of stay-at-home moms we've touched. We'll know when we see what kinds of businessmen, what kinds of doctors and lawyers and interior designers and teachers and nurses and architects we've produced. We'll know when we see what kinds of church members and community servants come out of RUF.

It's the ripple effect. We reach and equip for a time, and then we watch the ripple effects of our ministry. It's the most beautiful part of campus ministry!!

And this past weekend, we were blessed to see just a few of the ripple effects as we were reunited with several former RUF students from Texas Tech. (where Marc served as campus minister from 2001-2008. Many are not pictured, unfortunately, but you'll get the idea...)


In Dallas, we met up with students that were involved in our very first year in RUF. (it was also the first year of RUF at Texas Tech!) What a joy to see them now as parents. As husbands and wives. As teachers in the poorest schools of Dallas, taking the transforming power of the Kingdom to places that we otherwise tend to avoid. As church members who are struggling to find and create true community. As librarians and tutors and engineers and pastors who love the Lord and are serving Him in their various callings.


What a JOY it was to laugh together, to catch up, and to remember old times! It was way too short. But our Dallas crew gave us a glimpse of the ripple effect 10 years later.


We were also SO privileged to take a trip over to Lubbock and see many of our former RUF students and alumni there. (Caroline even got to do "guns up," too!) I just can't put it into words how much we love each one of these people... both while they're in our ministry, and long after they're gone. It is like a slice of heaven when we are able to be in the same room again. (can you tell I'm a proud "mama" yet??) :)


We were also able to visit our former church in Lubbock and spend time with friends there. It's just amazing how much you feel "filled up" when you're in community and visiting old friends. The pains you feel are so alleviated-- it's wierd how that happens. The opportunity to laugh together and cry together?... oh, my cup overflows. It was better for my soul than any Hawaii vacation.


Plus, I got to meet new additions to our church family, too. :)


We loved visiting old neighbors, too.




We praise God for the way He has blessed us with knowing so many dear friends, many of whom read this blog! We are so rich with love. We are so grateful. I pray He will continue to use us in years and years to come for His glory.

west texas...

Here's a few images of things we've missed from West Texas...


(everyone who's ever driven the 5 hr. drive from Dallas to Lubbock knows the disappointment of seeing this sign as it's there to greet you when you finally reach 84 from I-20 & you're tempted to think you're almost there!)


We've missed our former cat, Stonewall, who stayed back in West Texas with neighbors. Stonewall's sister, Jackie, :) (do ya think we were meant for Virginia or what when we name our cats Stonewall & Jackie?!?) is happily living with a former student in Florida.


In West Texas, you get HUGE, beautiful sky. And lots of wind. (don't know that I miss the wind part, though...)

And another thing we've missed...


Josh Collins' explanations that leave us all cracking up. :)

open adoption three years later...

There is no doubt God had an amazing plan for our family long before we ever knew it.

It was exactly three years ago (on Thanksgiving weekend!) that we sat across the table from a 21 year old girl named Megan and her 2 yr. old son, Brayden, for the first time. As she sat down in her chair, I couldn't help but look down at her pregnant tummy and wonder, "Could THAT be my baby?" Quickly I shrugged off those thoughts. Just focus on loving this girl and this baby boy sitting in front of you, Amy. THAT'S who the Lord has placed in your life to love right now. Since Megan was the age of many of our college students, it wasn't hard to sit, listen to her heart, and love her.

She had just found out she was 4 1/2 months pregnant. First she had been told Caroline was a boy, but the week of Thanksgiving she found out the baby was a girl. The birthfather (same as Brayden's) was no longer in the picture and not even helping out with Brayden financially. She was desperately trying to figure out how she would make ends meet with a 2nd child. Though she knew realistically it couldn't happen, her heart was fighting her otherwise. As we listened to this beautiful girl talk, my heart broke for her. Like any mom, she wanted to keep her daughter and give her all the love she could.

(Adoption isn't a plan that a birthmom takes lightly. It is a painful, painful grieving process to realize and admit that you can't do it. I remember Megan having to remind herself through the pregnancy that her desires-- to keep the baby & love her-- were not as important as her baby's needs. That's quite a sacrificial love, if you ask me!)

As we said our goodbyes and drove away from that first meeting, I honestly thought that it would be the last time I would ever see Megan and Brayden. But hopefully our conversation was some kind of help to her, I remember thinking, whether she keeps the baby or places her for adoption with someone. Hopefully we were able to minister to her in her pain, even if we never see her again. As we recapped the conversation at the restaurant, we couldn't help dream of the "what if's" and so we guessed our "chances" of Megan's baby actually becoming our own in less than 4 months.

"I give it a 20% chance," Marc said.
"I give it 10%." (always the optomist that I am...) ha ha :)


Well, God already knew that was a 100%. Looking back, it is beautiful how he used that first meeting to unite our families together in love. And now three YEARS later, my heart still leaps with joy at God's gracious plan! That beautiful girl, Megan, and her son, Brayden, who were strangers three years ago are quite an important part of our extended family.

I know it is probably hard for most people to fathom the dynamic between an adoptive mom and a birthmom being one of mutual respect and joy, (usually the movies or the false stereotypes picture it as otherwise) but we truly rejoice at the times we are able to reunite again like yesterday and celebrate God's faithfulness and provision for us all!!


My sweet daughter knows her "Mommy Megan."
She knows she came out of Mommy Megan's tummy.
And she already knows that it was God's special plan for Megan to pick Mommy & Daddy to be her forever parents.

Open adoption is beautiful:

1. For Marc & I: We get to raise and love a precious child. (WE are the luckiest ones out of this deal!) We love knowing there's another mom out there that is just as proud and heartbroken along with us. She isn't in our "business" or wanting to steal our child away. Nope- she's eternally grateful and a wonderful cheerleader! And over the past year as medical questions have risen, it has been so helpful to be able to talk to Megan about family history stuff and we are both able to grieve this health process together. (it has also been another confirmation to us all of God's plan for placing Caroline in our family)

2. For Megan: She gets to watch her daughter grow up, knowing that she gave her the life she wanted her to have. She doesn't have to WONDER. She can just check the blog or call us anytime. She gets a relationship with her daughter, even if it is long-distance.

3. For Caroline: She gets love from ALL sides!! She doesn't have to WONDER where she came from, or go through an identity crisis surrounding her adoption. She just KNOWS.


Plus, she gets an extra Grandma out of the deal, too!!! :) (who wouldn't want that?)

Here are more pics from our fun day together:
















We praise God for how he united our families together.


We love you and are so proud of you, Mommy Megan. We have a feeling you feel the same way... :)

when in texas, do like the texans...

Howdy, y'all! For Thanksgiving, we lived it up Texas-style!


When we got off the plane, can you believe my Pop had a stretch limo waiting just for us!?! (Alright, so it wasn't just for us. We had 7 people in our family that needed a ride from the airport at the same time, so Pop splurged a little to have us all picked up. But still. A first limo ride at 2 years old??)


Now Pop, you realize I'll expect this kind of treatment ALL the time... :)

Before we picked up my cousins, you better believe we turned up the music and I did some DANCING! So fun!

All of the cousins together! Trevor (9), Tyson (6), Me (almost 3), & Erik (18 months). (I'm the favorite granddaughter in this family of BOYS! he he)

My Pop & Mamie loved having all their grandkids together. (and so did we!)


I have the coolest cousins.

So, when in Texas, do like the Texans.

We shimmied on down to the Ft. Worth Stockyards and watched the historic cattle drive.

We ate Texas barbecue.

We ate Tex-Mex.

We tried on cowboy & cowgirl hats.

(did I mention we ATE?)

We moseyed on over to this HUGE Christmas tree for a quick photo op... again, everything's bigger in.....)

And what could be more Texas than to go to a RODEO!!! (yee-haw!) Okay, so I (Caroline) missed out on this part of the trip, but my cousins Trev & Ty had a BLAST!

And I didn't have such a bad time myself either. See y'all back at the ranch!

when nanny comes...

When my Nanny blows into town for just 2 days, you wouldn't BELIEVE the things that get done around here...


I get LOTS of lovin' and play time.

All our clothes get cleaned and folded. Daddy's office is spotless. (um, that's quite a feat) Furniture was painted. Our basement has been reclaimed from the RUF meeting room to MY playroom again! (RUF will now be meeting in a new location next semester-- behind the Muse Coffee House on Kemper Street)


Our house got all ready for Christmas!


(reach!!)



AND... the best part?? I got a NEW bed and a NEW room!! More pictures coming later, but we'll give you guys a sneak preview..


I LOVED it! (here I am about to take my first nap in my new bed)

Whew! Thank you SO much for all of your help, Nanny & Papa! We love you!