gluten free, day 2...

A little better than day 1.


Even Daddy enjoyed the gluten free crunchy rice cakes with peanut butter and banana on top for lunch. :) Dinner was gluten-free pasta noodles with spaghetti sauce. Didn't quite go over as well as I had hoped, but that's okay, right? (Deep breath.) We'll figure this out.

Still completely overwhelmed and scared at how this is going to happen. As you can see from my blog titles, I can only take one day at a time. Everything else in my life seems to be standing still while I'm literally figuring out how to SURVIVE from meal to meal. (again, this might have been an exciting challenge if I was the type of person who loved to cook and plan out food choices... but to someone like me, this is almost mind-boggling at times!)

But again, I am blown away by God's provision of YOU. You guys have been SO INCREDIBLY helpful to me in sending me all kinds of GF information as well as love, prayers, resources, comments, and encouragement! (I'm so sorry there's WAY too many to respond to, but please know I am sooo grateful for them all!!) Since yesterday, you've given me SO much information to read, so many potential people to contact if need be, and lots of gluten free play-dough recipes! (yay!) I am beyond grateful. (now can someone come and be my personal gluten-free menu planner, chef, and grocery shopper?!??) :)

It was also God's provision to have my parents fly in today from Texas and have them here with us this week. Caroline went CRAZY to see them! (she's been looking out the window all week waiting to see their plane, you know...) ha!

Okay, so overall we're hanging in there. I definitely know more gluten-free foods today than I did yesterday. Every day (and every meal) is a very real challenge right now, but I'm sure that in time we'll get into the swing of things and life will feel "normal" again.

But can I just say... right now, I'm HUNGRY!

gluten free, day 1...

(Deep breath.) Well, we made it.

My daughter is blissfully sleeping and still alive after day #1 of our (at least) 3 month gluten-free treatment. :) You laugh, but as of last night I wasn't quite so sure that would be the case... :)

I, on the other hand, am a bit frazzled and incredibly overwhelmed.

I love Caroline, and I know we'll get through this somehow, but right now, the learning curve is just SO steep! I feel like I have no idea what I'm doing. There is SO much to learn and SO much to do with no time to prepare-- we've just been thrown into the mix and have to learn to swim NOW. I'm literally looking at everything in my refrigerator going "is that okay?" "is that gluten-free?" Learning how to read ingredient labels and figuring out what, indeed, is free of gluten is initially oh-so time consuming.

God must have a sense of humor, because for those of you who know me well, you know that I am NOT a chef by nature. I CAN cook well, but honestly, if given the choice between cooking and eating out, I'd probably pick eating out way more than cooking at home. (Sorry, I know that's despicable to all you out there who love to bake and cook. But it's just not in my DNA.) And now eating out is going to be incredibly tough. I'm in NO way, shape, or form a good meal planner by nature, and this has to be the biggest challenge ever. And I've probably only been IN a health foods store once or twice in my LIFE, and now I'm having to stock my pantry with the stuff?! Suddenly I'm purchasing things like flax seed, coconut oil, probiotics, rice cakes, and a bunch of other "natural" things that just aren't ME, you know? I mean, where can I get the gluten-free pizza, people?! (and by that, I don't mean the powdered mix that I'm supposed to mix, stir, & whip up into a crust myself... but thanks to someone's help today, I heard of a local italian place that potentially serves gluten free pizza!!! 'Twill be our new favorite place, I'm sure.)

But mixed in with God's sense of humor is always His provision. And I am thankful. Who knew when we bought this house that there would be a 100% GLUTEN-FREE STORE less than 5 minutes from me?! Grace. Grace. And last year, Marc's brother was diagnosed with celiac, so we have a family who understands. Grace. Grace. And my parents (who we haven't seen since Thanksgiving) already had plane tickets to fly in from Texas tomorrow!! Grace. Grace.

Yes, it was quite the day. My whole day today was centered around food and gluten. Woohoo. That's a reason to get up in the morning, ain't it?! :)

• I cleaned the kitchen and put away the GF groceries we bought yesterday to get us started.
• I served Caroline a gluten-free breakfast of an egg, gluten-free cereal, milk, and some fruit. (no problem there!)
  
• I took all of the gluten stuff OUT of the snack cabinet (goldfish crackers, cereal bars, crackers, oatmeal, etc.) and made way for the GF stuff (GF cereal bars, GF mac n' cheese, etc.)
• I put away all of our play-dough and washed all of the plastic accessories (yep, play-dough has gluten! I need a gluten-free play-dough recipe PRONTO or I'll have one mad toddler on my hands!)
• I tried to research online about GF diets and recipes, but ugh. It's just too much.
  
• I took Caroline to the grocery store to get some more gluten-free groceries (upon entering ANY grocery store now, she is sure to belt out singing "Jesus Loves Me" as loudly as possible! And dare I tell her to be quiet?! No way! She's not ashamed of the Gospel, so why would I want to stop it? So there I go, pushing her down the aisles, letting my "little evangelist" do all the work for me! ha ha!)
• I put away all the GF groceries, and then sort the ones that I have to return because I came home & looked some of them up online to see that they are made in factories that also produce wheat products... ugh!
• I served Caroline a gluten-free lunch of milk, GF bread with peanut butter on it, and applesauce.

This was her reaction to the GF bread. Maybe I wasn't the only one who thought it was really gross. :) She ate a bite or two and stopped, but didn't complain.

Tonight I made all of us a gluten-free dinner of a salad, baked salmon, and rice. (although now I'm wondering if I screwed things up by putting cashews on top of the salad in lieu of croutons... anyone know??)


Caroline thought it'd be fun to put the rice & fish on TOP of the GF bread & eat it that way. At least for a couple of bites. :)


And then she finished off her dinner with a big bowl of strawberries! Yummm.....

I don't think this gal is going to have too many problems with these changes. WE on the other hand... :) I definitely need the Lord to sustain us now, because apparently I've been sustaining myself with alot of GLUTEN! :) (not to mention, after today, I'm STARVING!!!!) ha!

Thank you, thank you, THANK YOU! I've heard from many of you yesterday & today in facebook messages, comments, phone calls, emails, etc. and I just want to say how much we appreciate all of your encouraging comments, words, prayers, help with gluten-free stuff, and advice. We need all the quick & easy help we can get. (although it is very overwhelming at first...)

Even though this is going to be WAY harder on us than it is on her...

I think she's worth it. :)

the last supper...

Whew. What a day! As promised, here is our update on Caroline's health situation after meeting with the pediatric gastroenterologist today. It's a lot for us to digest (no pun intended!) and there is so much more I could ramble on about, but I'll try to keep everything somewhat succinct and clear.

the facts: In the general population, 1 out of every 133 people have celiac disease (aka. gluten intolerance). Caroline's bloodwork showed that she has a genetic predisposition of a 1 in 10 chance that she will have celiac in her lifetime, even if she WASN'T having any symptoms. (very high risk category) Her form of alopecia (alopecia totalis- loss of all body hair from the shoulder up) and eczema on her skin are both BIG signs that she is facing an autoimmune problem of some sort. (which we already knew) So this could be alopecia caused by celiac, or it could just be alopecia on its own. The rest of the bloodwork was not conclusive to celiac, so the doctor gave us two options on how to continue. Okay, real quick:

Option #1: Put Caroline on a gluten-free diet for 3 months, do a blood test again, then see what the numbers do. (see below for what a gluten-free diet is) If she DOES have celiac, perhaps her hair would begin some regrowth. We'll see. At the end of the 3 months, then we'd do a "gluten challenge," where you re-introduce a little gluten into her diet, and then see what the numbers do on bloodwork.

Option #2: Have Caroline undergo a short endoscopy surgery (under sedation) where they would biopsy tissue from 3 places (her esophagus, her stomach, and her intestine) and hopefully they would be able to "find" the celiac, if it is there. (Celiac is a patchy disease, so even with doing a biopsy in 3 places, it still might not show up, even if it is there.) Anyways, if it DID show up, we'd know it was definitely celiac & they'd say "go on a gluten-free diet for the rest of your life." If it didn't show up, my guess is that Marc & I would probably still wonder what would happen with a gluten-free diet. And we would go on the diet anyway.

So can you guess which option we chose? Yep, after writing out a pro & con's list on the ride home, we chose option #1, the gluten-free diet. Let's skip the unnecessary cutting on our 2 year old and get started on a healthy plan right away!! My thought is that even if it's NOT celiac, this has to help her little immune system calm down somewhat, right?

Well, after such a big day and a big decision like this, we couldn't jump in quite yet, so we had an official "last supper" filled with GLORIOUS GLUTEN together. :)


You got it. A big ol' pizza and a salad with lots of CROUTONS. :)

Tomorrow morning we begin gluten-free.


Here's a few things that I quickly pulled together to give you guys an idea of what you can eat that's gluten-free: any fresh fruits. any fresh vegetables. any fresh meats. (not shown) any rice or rice product or potato or potato product. Just no breads or wheat/oat/barley/rye products. (but now you can buy "GF" pizza crust mixes, GF pastas, GF brownies and cookies, GF bread, and just about anything else you can think of!)

It's definitely a do-able diet, but much more expensive and much, MUCH more inconvenient. You have to use separate cooking utensils. You have to use separate toasters, peanut butter jars, butter dishes, etc. Eating out is almost impossible, because you have to know exactly what seasonings are being used, whether a utensil has touched an ingredient with gluten in it, etc. Even a ketchup bottle has probably touched someone else's bread before. You can't cheat ONE BIT.

But as expensive and inconvenient as it all is and will be, I love my daughter. And I'm willing to do anything and everything in my power to give her little body every opportunity to get better. Right now, we feel relieved to be doing something and to have a plan, yet exhausted and overwhelmed at the major changes we face. (anyone with EASY GF recipes & ideas, please send 'em this way!)

So thank you for all of your prayers. We are gonna NEED them now! SO many overwhelming thoughts go through my mind:

• what am i going to feed her?
• can she have this? can she have that?
• i have SO much to learn & figure out right NOW!
• how will we handle certain social situations with food?
• how will we eat out? (if you know us, you know we LOVE to eat out) :)
• how will SHE handle the small changes?
• how are WE gonna DO this? (i refuse to cook 2 separate meals each mealtime)
  

So many things, so many changes. Agh!

I realize this post is getting way too long, so perhaps I'll stop here and say "to be continued..."

Starting tomorrow, we're gluten-free.

that's what friends are for...

Update: Please pray for us as we're headed tomorrow (Tues.) to meet with a pediatric gastroenterologist re: the celiac/gluten-intolerance lead. After reading more about it, we're not all that hopeful that we'll walk away with any solid answers or a "cure all" for Caroline's alopecia. But we know that God will continue to lead and guide us as we continue through this journey... will update you all tomorrow.)

what IS...

A dear, dear old friend of mine wrote me an encouraging email, (you know the kind-- you're practically moved to tears one minute and in the next sentence you're laughing!) and in it she said:

"...it struck me that even though y'all have this hair loss before you and a diagnosis looming, you're still taking the time to see what IS: Caroline as a thriving, brilliant, curious little girl..."

Oh, that resonated with me SO much, as it is incredibly tempting to consume ourselves in this medical puzzle we're in. But she's right. The loss of hair is only one small aspect of my sweet daughter, and not the one that she certainly wants to be defined by. Nor do I.

So in between doctor's appointments, running stool samples up to the hospital, and endless hours of internet research on alopecia, I want to stop and see "what IS."

And here's what IS:

I have a precious little girl who'd give just about anything to make playdough ice cream cones with her Daddy...


... who wants to try to walk in Mommy's tall boots...


...who gets the biggest kick out of air blowing up her shirt...


...and who sings, sings, SINGS!


She is our beautiful princess and the love of our lives.

we might be on to something...

So today I (Amy) missed a call from our pediatrician, who left us a message about the results to some of Caroline's bloodwork from two weeks ago. She mentioned something in the results might be showing a possible suggestion towards celiac disease. Know what that is? It's basically gluten intolerance. About 1 out of 250 people have it, but usually only 1 out of 10 people WITH it are even diagnosed!

You can have lots of symptoms. You can have no symptoms.
Sometimes you can have just one symptom: HAIRLOSS. (!!!!)

And so our journey gets a little exciting at this point as we'll now head to see a gastroenterologist and see where this leads us. And if it IS celiac, it can be controlled for life by eating a 100% gluten-free diet! (with the good possibility that with the loss of gluten, her hair would hopefully grow back!...it could also have other health benefits like helping her eczema as well... they're all related apparently.)

Kinda wierd that as of today we're praying and hoping for a particular disease! But oh, if this were just as simple as staying away from any gluten, wouldn't it be fabulous? Marc's brother was also just diagnosed with it this past year, so Caroline and Uncle Johnny would be eating the same meals at holidays! :)

So would you guys keep praying for us, and pray that this lead might give us some definitive answers about our daughter's health? (Marc compared all of our hunting for answers to when you're fishing and you FINALLY get a nibble on your line!) :) We realize we still might not actually catch a fish, but nevertheless it's nice to have a lead on anything.

Here's why this could be good news to us...
If this is just alopecia, it's completely unpredictable for life.
If this is alopecia as a result of celiac, it could be controllable for life. (ooooh, the control freak in me just gets WAY too excited about that!...)

Thanking God for leading us thus far & pleading with Him for mercy,
Amy

p.s. thank you SO much for the CUTE hat, cousin Lala & Aunt Sharon!

faucet fascination...

We've all got our little quirky obsessions, right? Well, I've got a new one for ya. Lately it's been the only thing I can think about....


The kitchen sink! Seriously. I've come down with a major case of faucet fascination.


You can be sure that morning, noon, or night, EVERY day, THIS is where I want to be!


As the water trickles out, I enjoy filling and pouring to my heart's content.


The good news is that I'm drinking PLENTY of water. (maybe a little too much, if there is such a thing...)

And the bad news?

I sure don't want to see our water bill... :)

letters and numbers...

potential future career paths #12...

Shall we do it again? (Who says you can't have any fun even when your hair's falling out?)

Let's see what I could be destined for....

Hiker on the Appalachian Trail.


Handywoman. (yes, this was the scene when our family locked ourselves out of the house this week & we tried to "break in" by attempting to crawl through the pet door...it was quite like a scene from Mission Impossible! ha!)


Professional taste tester. (yummm...next cupcake, please!)


The next Lynchburg RUF campus minister??? ha ha!


Dog whisperer.


??? Now it's your turn! Let's hear your guesses & we'll pick a winner!

a birthmommy's love...

Birthmommy Megan, we were SO excited to get your birthday packages in the mail yesterday!


And good grief! You and Grandma B. totally went overboard! There is NO doubt that this gal is loved.


When I saw Abby, I blurted out loud, "Abby's Flying Fairy School!" (those of you who know Sesame Street know what that means) :)


Mommy Megan, I'm LOVING being a ballerina! I like to put on my new tutu and spin around! Thank you and Grandma B. so much for everything. We love you.

From Mommy: Megan, it has been SO good to catch up with you again over the past few days. It is so wonderful in adoption to have another "mom" out there that loves my daughter and is grieving as well through this whole ordeal. I know it must be hard sometimes to only see the still images on this blog, especially when they only seem to worsen and worsen as each hair or eyelash falls out. You (and most others who read this blog) don't get to see all the hilarious things Caroline says and does on a daily basis. It's all the new, amazing things she's doing and saying that make you notice the hair less and less the more and more you're around her. As you said the other night, she is TRULY beautiful.

I love how you admitted that you are putting blame on yourself for somehow "giving" this to her because I struggle with feeling the exact same way! Somehow I'll start to think, "What have I done to her??? What did I do wrong?" Aren't we nuts?? ha! :) I know you struggle with guilt over this, and maybe you feel like you somehow gave me a "faulty" child. But I want you to know deep in your heart that you gave us the GREATEST child we could have ever asked for. Oh, Caroline is a dream come TRUE!, and you placing her in our family was the greatest thing that has ever happened to us. Almost every night when we pray, we thank God for His plan in adopting her into our family. Our love for her (whether she goes bald or not!) is just as strong (if not stronger) than if she had come out of my tummy.

I know our hearts break together over this, and it's just nice to have someone else out there who truly understands when it's your child. We really appreciate how supportive of us you are and how you show you have complete confidence in us. (although we tried to tell you we were cursed!! ha ha!!) You probably already know this and I probably don't even have to say it, but I am a fighter & we're gonna get this girl the best help we can find!

Thank you (and your mom!) for sending all the great clothes and gifts our way. I know that right now Caroline doesn't really understand how awesome that is, but it won't be long before she'll be able to look back and see just how stinkin' loved she has always been from the very beginning!

What a special girl she is. And what a special gal YOU are to US!

We love you!
Amy

at 24 months...

At 24 months...

• I LOVE animals, especially Aunt Sharon's doggie, Sydney. "Pet her," I say.
  
• I weigh 27 1/4 lbs (50-75% percentile).
• I'm 34 1/2" tall (50-75% percentile).
• I can sing my A,B,C's & Twinkle Twinkle Little Star perfectly, even with the right notes! I also know most of the words to "Come Thou Fount of Every Blessing," "Holy, Holy, Holy," and the Lord's Prayer! Music is definitely MY thing! (I wonder why...)
  
• I can point to & recognize almost every letter in the alphabet! (Mommy thinks I'm one smart little girl!)
  

• A fun idea to me is playing play-dough together with Nanny. (although I still refuse to learn my colors...except for pink!!) :)
  
• I'm talking in complete sentences! (ex. "Mommy has glasses on." "Mommy, I want to get down please." etc. etc.) Language is an AMAZING process to watch.
  

• I LOVE to play and explore! (here I am at the interactive children's museum in our town. I loved to crawl in this little cubby of the "Big Red Barn" and play with the chicken's eggs!)
• My new-found love is to push a chair up to the kitchen counter and get into the top cabinets...
• I'm a very sociable girl. I tell everybody "hi." After my bloodwork at the doctor today, I said, "Thank you, doctor." ha! Other words to describe my personality: active, VERBAL!, sweet, understanding, smart, & inquisitive.
  

• I'm a pour-the-sprinkles-onto-my-cupcake-kind-of-gal! (and then knock the entire cup of sprinkles onto the floor!) I had fun at my friend's birthday party this weekend. (Jonathan was born the exact same day I was!)
• I absolutely LOVE it when the RUF college students come over to our house!
• And regardless of how many hairs I do or don't have, I am my Mommy & Daddy's beautiful princess!

Update: Where to start?? Well, it's been a really rough week emotionally. (although it was wonderful having Caroline's birthday to take our minds off of things!) Our dermatologists at UVa are thinking that Caroline probably has a severe alopecia. (she is down to only a few eyebrow & eyelash hairs at this point, and her hair on her head continues to shed slowly. No signs of regrowth.) With this diagnosis, it is still completely unpredictable what the future will hold for us, as I've shared before. Her hair could grow back completely. Her hair may never grow back. We don't know.

We are doing some more testing on her this week to see if there might be any other contributing factors in her system to help explain this or to help us fight this. Today our pediatrician said that Caroline's case was the first she'd ever seen in her 12 years of practice here in town. (though she'd seen it once before in her time in Ohio.) It was an answer to my prayers when she started talking about the possibility of helping refer us to Johns Hopkins or someplace in the area that might be able to give us a solid second opinion. So our journey continues... I'll keep you posted.

Ways you can pray:
1) pray that the extra testing this week might help us know what's going on or provide any extra insight
2) pray that the Lord would give comfort, peace, strength, & rest to me & Marc (thankfully, SHE is as happy as can be & oblivious to the whole thing! It's Mommy & Daddy that are having the rough time!)
3) pray that God would give us wisdom to know what steps need to be taken next, and that He would continue to guide us through this tough time
4) pray that we would find a healthy balance-- all of this is terribly time & energy/emotion-consuming and it's hard to think about anything else right now! There's a fine line between being Caroline's advocate and being overly consumed, and I'm afraid I'm not doing well at finding that balance.

We know the Lord is growing us in ways we never dreamed. In part of this, I am being challenged on my ideas of beauty and the value I hold on it. ("Beauty is fleeting and charm is deceitful, but a woman who fears the Lord, she shall be praised." Prov. 31) Pray that my desire for Caroline to be a godly woman would outweigh the desire for her to be physically beautiful. (although I still think she is beautiful girl!!!) If the way God wants to work in my daughter's life to bring her to Him is without a single hair on her head, pray that I would rejoice in that above all else.

Thank you for thinking of and praying for us.

2nd birthday bash...

Since my birthday fell on a Thursday, which is our usual RUF night, we invited the students to come early to RUF to help us celebrate my 2nd birthday!


(Afterall, these guys are the highlight of my week! I know them all by name & they are practically like family to us anyway!)


Sesame Street was, of course, the theme of choice this year!


Nanny made us a delicious cake & Sesame Street cupcakes.


Yummmmmm! A cupcake here...


Some cake and ice cream there... :)


Mommy & I danced to the Sesame Street tunes we had playing.


More presents!


Thank you for my gift, Lindsay.


And what toddler birthday party isn't complete without at least a little tantrum?! :)


It was so fun to trade in our tears and celebrate! It's been the best two years of our lives.


We're one blessed little family.