Wednesday, March 31, 2010

eat mor chikin...

Yesterday when Daddy came home and we checked the mail together, the Easter Bunny came! I LOVED getting a package from Daddy's fellow RUF campus minister's family at UVa that was filled with Jelly Belly jellybeans, an Easter Bunny PEZ dispenser & candy, and some GF playdough! (all gluten free!!) Thank you, Slate family! Mommy hasn't even had time to give a THOUGHT as to what kind of candy might be gluten free for Easter, but she & Daddy almost teared up when it came to our mailbox!

So after checking the mail, we were off for a quick family fun night at Chic-Fil-A. (where I can eat gluten free! yay!)

Everything was going GREAT & I was having a fantastic time...

...until I spotted HIM. See that cow over there? Yeah, him. I thought, What IS that thing?!? And what is he doing here in the restaurant??

And can you believe he even had the AUDACITY to try to TOUCH me!?!

You better believe I had my eyes on that thing for the rest of the meal as it pranced around the restaurant.

And then a funny thing happened.

I saw all the other boys and girls walking UP to the cow and giving out HUGS to that thing. And then something clicked in my brain. "Come here, cow!" I said.

High five! I did it! (whew!) And I did it again & again. And each time I did, it made the cow dance! :) It didn't take long before that cow was my buddy. And even though I was a little timid & skeptical at first...

it ended up being a great family outing. :)
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Tuesday, March 30, 2010

3 weeks...

Tomorrow will mark 3 weeks of gluten-free. Whew! I (Amy) have gotta admit, I'm feeling quite proud of myself at this point-- I'm DOING it! We're making it! We're 25% of the way through our initial 3 month commitment to this!

Still overwhelmed. Still WAY behind on all of the recipes, contacts, articles, websites, etc. that you all have so generously sent my way. Still struggling with heartache as I watch my baby girl continue to lose hair, struggle with eczema, and see an overall paleness of her skin return after a few days without those problems. It leaves unrelenting doubts in my head-- "is this really what this is? is this going to fix it? is this going to bring her hair back? if so, when will i see results?"

But like alot of things in life, God isn't fixing this one overnight. Nope. We're being challenged to stay faithful to a course for a long time before we might see any results. We're having to sit and REST in uncertainty and ambiguity for awhile, facing fears and idols of our hearts in the meantime. And for people like us who tend to pace in front of the microwave & want everything FAST and INSTANT, this is not the way I want it. But it's the way He has for me. And I have no other option than to cry, deal with the mess in my own heart, do everything I can for my baby girl, and ultimately TRUST Him. (If only that were as easy as it sounds, right?)

The latest "drama" has been suspecting that our baby shampoo might have gluten in it. I know-- isn't it crazy that even our hair/skin products would contain WHEAT?! Like every 2 year old, Caroline likes to take a sip of bath water here or there. SO... the hunt for a gluten-free baby shampoo/wash wasn't as easy as you would think. Or at least in my house it wasn't. (But I think we've found one & will start using tonight. Any recommendations out there for a GF baby sunscreen for the summer, by the way??)

I could practically write a novel about how ridiculously careful you have to be on this diet-- it's not like diabetes where you might be able to "cheat" a little here or there. There is ZERO tolerance. For not even a tiny CRUMB. If the cooking utensil even happened to TOUCH something that has touched bread or anything with gluten in it, you can't eat it. It's been contaminated. If the salad comes with croutons on it, you can't just pick them off. You HAVE to send it back and politely ask for another one. (that's why eating out is very difficult-- you have to talk with the chef about every little thing & no one likes to be "that guy," you know?) Unfortunately it's just a necessary evil with the GF diet.

I see people rolling their eyes when I explain the level of strictness you have to maintain with the diet, and I wish it didn't have to be the case. But I know that everyone who "KNOWS" celiac or gluten intolerances understands because they face exactly the same challenges. (and those who have been on the diet much longer than us have lots more experience about how to handle all of the changes and challenges that it brings.)

At least it continues to get "easier." I have options. I have figured out some go-to meals.

And a certain someone doesn't even know the difference. :) She's just as happy as ever to receive her yummy food. (have I told you yet that when she really likes something, she'll exclaim, "Yummy! It's like ice cream!")

For example: our gluten free lunch today. Cheese, bacon, & apple quesadillas with a side salad of lettuce, tomatoes, cucumbers, cheese, & carrots. (Caroline just started eating the mini "crunchy carrots"- as opposed to the little shredded ones-- and she loves 'em.)

When we eat pizza at home, the only difference is that Caroline gets her own pizza with a gluten-free crust.

And THESE have been a life-saver! Marc swears these are better than regular Cheerio's! The way Caroline goes through them, it must be true.

So we're making it! Thankfully food isn't the center of our lives each day.

This little gal IS. :)
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Saturday, March 27, 2010


Thanks to our neighbor, (Leah's mom) we heard about an Easter "Eggstravanganza" put on by a local church for the community! It was at a local farm and it was AWESOME! Pony rides, animals to pet, bouncers, cotton candy, and a helicopter that dropped 4,000 easter eggs! (which we were sorry to miss that part...)

This was a dream come TRUE for me today! "Hi lamb!" I said.

"Hey goose!"

And now I'm finally big enough that I enjoyed jumping in the bouncers. In this bouncer, I would jump around for a minute, and then climb a tall staircase up to a big slide....

and... wheeeeee!!! I had NO fear as I soared down the slide, my hat flying off each time!

I even got so brave that I thought it'd be more fun to do it backwards on my tummy! ha!

Daddy taught me and Leah "Ring around the Rosies."

...we all fall DOWN! (giggles)

The highlight of the day was that I got to ride a HORSE for the first time! (when I first saw the horses, I was afraid when Mommy asked me if I wanted to ride them, but when we came back by them again later & I saw all the other kids doing it, I wanted to take a try. "Now Caroline's turn.")

"I ride a horse!" I repeated several times on my ride. :)

And though I was a trooper through it all (it was all smack dab in the middle of my usual nap time), towards the end the sleepiness & fussiness won over. So we missed the helicopter egg drop this time, but oh well! We still had a FABULOUS time as a family!
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Friday, March 26, 2010

hat people...

Who knew that we'd become hat people?! Here's the latest hat that everyone stops me in the grocery store to compliment me on... (and no, Mommy did not make it herself... but she ordered it online from someone who did!)

(my serious expression is due to the fact that Mommy had the audacity to take my picture while I was in the middle of watching Elmo! Doesn't she realize that's important business?) :)
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Thursday, March 25, 2010

week 2...

Yesterday marked our 2 week marker of being gluten-free, and I suppose I should give a quick update on how everything is going.

First, an update on Caroline: obviously, no new hair growth or follicles. Still slowly losing hair. (but that would be a miraculously quick turnaround, so we weren't expecting differently...) Her skin & complexion have improved- it is less pale and has a healthier look to it. Her eczema is better than before, yet has not gone away. This might be a little TMI, but let's just say her bowel movements have improved tremendously. Good things! We'll see how things continue...

While the food planning/preparation part of this has gotten a little easier than last week, the emotional part of things has been much harder. Perhaps that's because we were so much in "survival mode" the first week, we didn't have any time to feel??

When I'm with Caroline alone, none of this whole ordeal matters, you know? We go through our normal everyday activities: playing, reading, coloring, running errands, eating, etc. We don't talk about hair loss or appearance (except when she hears how beautiful she is!). My love for her goes SO far beyond her hair, so it really doesn't matter when we're alone as a family.

But it's when she's napping or asleep at night, in my quiet moments, or when we're out in public and she takes her hat off in front of strangers, or in a conversation someone doesn't mention it or talk about it when it feels like it's the elephant in the room... that's when it's hard for me. It's just an ongoing battle of sorrow, fear, anxiety, and disappointment in my heart. Nevertheless, we press on and just do what we've gotta do, one day at a time.

I love it that our RUF students have been so great with Caroline. I watch them each week as they love her, play with her, and treat her as if she's the most beautiful princess in the whole world. It's enough to almost bring me to tears sometimes. I'll overhear them telling her that her hat is cool, and I think that's a large part of why she's doing better at keeping it on. (ha!)

I'm seeing that when you feel like you're in the desert, many times it's then that God provides and pours out blessings. Just this past week, one friend at church cooked a HUGE meal FILLED with gluten!! (for me & Marc, of course) and if you've ever received a meal during a rough time, you know that it literally tastes like grace. It was wonderful. Another friend at church showed up on Sunday with 4 BAGS full of gluten-free groceries for Caroline! Grace, grace! Another long-distance friend sends an article on GF recipes. Another friend sits with me in my living room every Tuesday afternoon while Caroline naps, listens to my heart and tears, and is walking with me through it all. And there's more people and things that I could mention, but it's amazing to me how many different ways God uses His people to communicate HIS love to me. How can I complain? He is with me even when I may feel abandoned.

Many of you that are reading this blog are a gift to us from the Lord as well. We are grateful for loving, supportive family and friends that are grieving with us, hoping along with us, and praying for us. We love you!

Sunday, March 21, 2010

Saturday, March 20, 2010

at 25 months...

Things have been crazier than usual over here, so we missed giving you the monthly update on the 18th! Well, better late than never, right?

So here we go! At 25 months...

  • I just started spending LOTS of time turning thin pages in my books over and over! (not the thick board-books, but the thinner the page, the better!) Daddy's heavy study Bible provides me endless entertainment as I turn the pages one-by-one. :)
  • My sentences are getting longer and my thoughts are getting deeper. It's now a matter of what can I NOT say now, so here's some of my current mispronunciations that Mommy & Daddy will miss when I finally get them right: "It's stuckin." (for "It's stuck.") "Moogit." (music) "Bretat." (breakfast)
  • As my need for independence increases, so does my temper tantrums. When Mommy tells me to do something I don't want to do, somehow I think if I throw myself down and scream and cry really loud, it'll change her mind. (It doesn't. But I keep trying anyway.)

  • Another new FAVORITE thing to do for endless amounts of time is to drive. I looooove to push all the buttons, turn on the hazard lights, flip the sun visor's up and down, and yes, even wear out the battery on Mommy's car...
  • My most repetitive phrase is "Hey Mommy." (or substitute anyone's name in there-- "Hey Pop." "Hey Daddy." "Hey Mister Mike.") And the way I say it is so sweet that the person can't help but respond "hey Caroline" each time I say it. :)

  • I hardly know I'm on a gluten-free diet. Especially when I get to eat ice cream and yummy gluten-free brownies! Who says gluten-free can't be fun?! (trust me- I'm getting lots of the good stuff, too... )
  • Speaking of eating, I'm now quite the pro with a fork and spoon. I don't like to get my hands messy so I ask for a "wipe" (aka napkin) if something gets on them.
  • Yesterday I started verbally refusing foods in full sentences: "I no like peas!" "I no like dinner!" (I'm not saying all milestones are good...)

  • I like to sit and eat my snacks outside now that the weather is warming up and Mommy & Daddy have been painting the outside of our house (pictures to come). I also like to climb up and down ladders...
  • I'm slowly getting used to wearing a hat outside to protect my scalp from the sun, though I like to throw it off quite often.
  • Today I walked up to Mommy and said (totally on my own initiative!!), "I love you." Mommy instantly beamed with love. She told me there is nothing more beautiful in the world than hearing that.

Wednesday, March 17, 2010

we survived week 1...

We just completed Week 1 of our (at least) 3 month gluten-free diet.

Whew. We survived! There is still SO much to figure out and a trip to the grocery store is downright overwhelming, but we're making it. Meal to meal. I would probably pass out on the floor thinking about a lifetime of this right now, to be quite honest.

Here's a scenario from the week: Caroline started running a fever several days ago, and so naturally I go to the cabinet to pull out her children's ibuprofen, and wouldn't you know?! Gluten. Yep. So my parents (Pop & Mamie) run out to the pharmacy in search of GF children's medicine, and of course there's no medicines that flat-out say "gluten free" on the box, so then you're stuck reading a long list of ingredients on every medicine. Suddenly you're becoming best friends with polysorbate 80 and other wierd things you never thought you'd need to know. So we're at our house (consoling a sick, feverish child, mind you) frantically googling "gluten free children's pain reliever" while my dad is at the CVS looking things up on HIS phone (because, of course, the pharmacist had no idea...). Do you get the picture?? It's just utterly frustrating at every little step. But I know with time and practice, it'll get easier. (just in case you ever wanted to know, apparently the new Dye-free Children's Motrin is gluten free...) :)

It was also a little too exciting the first few days when Caroline's skin & eczema suddenly cleared up and her hair (what she has left) started looking really healthy. (I took her to the dr on Monday and even the dr noticed the changes!) Marc & I were more hopeful than ever at that point! Well, now in the last few days the eczema has flared up just as much as ever, and we're wondering if the new shampoo is what's making her hair look a little shinier/healthier. So I realize it's waaayyyy too early to get down about not seeing any results, but still. It was emotionally disappointing. And the fever has still not gone down, so we'll head back to the dr tomorrow & hopefully get some antibiotics THIS time. (ugh.)

As for the food, she's managing just fine! She loves her food & only a couple of the "substitutions" have been hit-or-miss. (Just as long as I don't bring out a big basket of rolls or something...) It's a priority to Marc & me that the three of us eat our dinner together, so my hope is that in the future I can figure out more meals that all three of us can eat & enjoy together. (No, I won't be going totally gluten free. Sorry.) Things like: roast & carrots & potatoes OR fish, rice, & broccoli, for example. Pasta dinners seem pretty easy, too-- I can just make a serving of GF pasta for Caroline. Mexican food just requires using corn tortillas & GF corn tortilla chips instead of flour ones. So it's do-able. And I know we'll keep figuring it out as we go.

I just pray that all of this will help her grow some hair back.

You know those moments at night after you've put the kids in bed, you're exhausted, and what you really want is to veg out and eat something yummy like ice cream, etc?

Well, in my house this past week, we ate crescent ROLLS!
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Tuesday, March 16, 2010

natural bridge...

Warning: You are about to see several "cute kid" pictures, but before you think about "ooh"ing and "aah"ing, we thought it might be fair to give you reality check first.

THIS picture really summarized much of the day. Yep. Travels with a 2 year old who doesn't feel well (running a small fever for several days now...) is not an easy thing. So just consider yourself warned.

Today we took Pop & Mamie up to the mountains (an hour from our house!) to Natural Bridge, VA. Would you believe Thomas Jefferson purchased this natural wonder and all of the land around it for $2.50?!?! (and now they make you pay 250 TIMES that just to SEE the darn thing!) ha!

Now bring on the cute kid pics!

(Okay, just so you didn't forget...)

Oh well! You can't win 'em all. :)
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Monday, March 15, 2010

Friday, March 12, 2010

gluten free, day three...

Best so far. (yesssss!)

We tried our first gluten free dining out today. (gasp!)

Everyone in town had been telling us about a place in town that serves gluten free pizzas! So we HAD to try it with Pop & Mamie.

For those of you who are gluten free, you know the inconvenience of eating out, even in a place that serves gluten free items. It's really important that you "get in good" with your waiter as you are required to ask details about how a food is cooked and what precautions are taken for each food item. In our case today, we had a GREAT(!!!) first experience because this restaurant was run by a wonderful Christian family who was incredibly kind and understanding of our situation. They even went out of their way to learn our names.

I know it sounds silly, but Marc and I almost burst into tears of joy as the gluten free pizza came to our table. YES! We can go out and eat pizza as a family together! Freedom! I don't have to cook every single meal! AND... I'm not hungry today either!! (praise Jesus!)

Tonight for dinner was pork tenderloin in the crockpot, green beans, GF macaroni & cheese, & cantaloupe. The mac n cheese wasn't quite the hit I was hoping for... she could definitely tell a change. (so speaking of, can anyone familiar with the GF world tell me what the best GF boxed macaroni & cheese is? And/or your best GF homemade recipe?)

I also went to the 100% gluten free store near our house today and loaded up on a few convenience items while I figure out more things I can get from the regular grocery store & save the expense. (who knew there are gluten free chicken nuggets!?!)

Day three. Whew. We're doing this. We're actually doing this! So thankful that I feel a little less like I'm drowning today. And Marc & I both agree that Caroline's eczema on her face and neck have already dramatically improved! (though it's still itching on her hands and behind her ears) Still.... those little glimpses of grace give us hope that we are doing something to help our sweet daughter.

I can't tell y'all enough how grateful I am of all your emails, messages, comments, and wisdom. They continue to pour in, and they are SO encouraging and helpful. Just knowing that people out there are rooting you on and empathizing with you is soooo motivating to keep going. All of this has been a boost to me personally-- I've gone from feeling totally helpless in my daughter's hairloss to feeling empowered to do something about it. Come on, hair!

And while my day was filled with all things food & gluten, you know what Caroline will probably remember most about today?

Catching a balloon with her Mamie. :)
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