Wednesday, April 28, 2010

stinky diapers and a millimeter of hair...

(how's that for a title, eh? ha ha!)

Gluten-free for 7 weeks today, folks! (I don't know why I feel the need to celebrate every Wednesday that we hit another week of this...)

Forgive me for bragging a bit, but I must admit I'm still pretty stinking proud of myself for this accomplishment! As someone who previously knew (and honestly, cared...) extremely little about cooking and nutrition, you wouldn't BELIEVE some of the things I'm doing now! I mean, really FAR-OUT things like chopping REAL garlic... :) And using REAL lemons for lemon juice... And eating RAW fresh veggies for snacks... And buying more fresh produce at each grocery store run than any other type of food... And cooking meal after meal after meal... (I know. I know. Many of you ladies are simply amazing in the kitchen and I feel embarrassed for even admitting all of that, but cooking just ain't, well, it wasn't my thing.)

But you better believe when your kid gets sick and her health is dependent upon you getting her the nutrition that she needs, it's AMAZING the lengths you'll go to. And in less than 2 months, I honestly look back and can't BELIEVE all the major lifestyle changes that we've made! (And we're still living to tell the tale...) :)

So enough of my bragging & here's a brief update on things for any of you who are interested:

Tomorrow our new pediatrician's office will be doing some bloodwork on Caroline to test for delayed food sensitivities. We are hoping that it might show us if there is another particular food that could be aggravating her system & keeping her gut from healing. (the thought is that if we can get her intestines healed, she will then be able to absorb all the nutrients & vitamins that she's being given in her diet and it will help with her gastro issues, eczema issues, hairloss issues, and strengthen/calm down her immune system overall. Wierd how all those things are related, huh? But we are hoping that once everything in her gut is healed, in the long-term we might be able to begin re-introducing foods that we have had to otherwise forego right now when her digestive system is strong enough to handle them again.)

And as you can probably guess from the title of this post, her digestive system ain't doing so well right now...

But we are also seeing some TEENY TINY beginning of scalp regrowth. Just like when her eyelashes started coming back in before we went gluten-free, these little 1-millimeter-long hairs are white in color and to see them, you've gotta look at 'em at just the right angle in the light, but hey- we'll take it. Since her eyelashes seem to be slightly darkening over the weeks (they are still extremely light colored, but at least they're there!), hopefully the scalp hair will continue to grow in and also darken in time as well. We'll see...

I know this is going to be a long-term healing process, (especially if you're waiting on hair to grow...) and that's hard. The sacrifice to make all of these gluten-free, dairy-free, soy-free, egg-free meals at home day after day (and also figure out what WE'RE going to eat, too!) does not come without grumbling. (from me, not from her) The dying-to-self of not being able to do simple things that we used to enjoy together-- going out for ice cream or pizza & putting her hair in bows and ponytails are just to name a few-- makes me so, so sad at times. As a "performer"-type personality, it just isn't all that glorious to spend an entire DAY when all you can say at the end of it was, "well, I kept my family fed." (I know that it IS glorious and not-to-mention my God-given calling right now, but you understand...)

In the past 7 weeks, there have been some GREAT weeks and there have been some heartbreaking ones. And of the MANY MANY things God is teaching me through all of this, one of them is that we all just want a quick fix to our problems, and He simply doesn't work that way. But amidst all of my tears, I'm praising Him along the way for all the things He's teaching me, both about things in the kitchen and things in my heart. He is mysteriously working this for our good and His glory, and on my good days I'm able to rest in that promise. Regardless of my feelings which are ever so fickle, He remains faithful to us, whether my child has a head FULL of hair or a beautiful shining bald one. And with a child Himself who suffered FAR more than mine is, I'm thankful He knows exactly what I'm going through.

Monday, April 26, 2010

gone fishing...

It was the first time Daddy took me fishing. (down at a little pond in the park by our neighborhood)

And guess what?! We caught a fish!

That fish totally cracked me up!

It was my job to take him and throw him back into the water where he belonged.

Whew... it's a rough life for a fisherman sometimes, ya know? :)
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Saturday, April 24, 2010

at 26 months...

(We're almost a week late on this one, but hey- better late than never, right?)

It's probably easy for folks to begin defining me only by what's going on with me health-wise these days, but lest you begin thinking of me more like a science experiment, here's what the REAL me is up to! :)

  • As you'll see from these pictures, I am an OUTDOORS gal. I want to be outside as much as possible, and my sand/water table is a PERFECT activity for me to learn.
  • I am 100% personality! Words that people would describe me might be: strong, polite, silly, joyful, sweet, and super smart.
  • Speaking of smart, my cousin Lala did a grad-school project in speech pathology on my language ability, and it said that at the time of my 2nd birthday in Feb, I was talking at the level of a 3 YEAR OLD!
  • I now wake up from naps and sleeping by exclaiming loudly in my crib, "See? I wake up from nap, Mommy!"

  • I'm a ball of energy! Dancing, running, going up and down stairs, playing at a playground, you name it...
  • I love saying all kinds of nursery rhymes and songs now such as "Ring around the Rosies," "Mary Had a Little Lamb," and "Rock a Bye Baby."
  • My favorite hymns to sing are "Holy Holy Holy," "Come Thou Fount," (I can sing 2 full verses!) "Jesus Lover of My Soul," and "Amazing Grace."
  • I know all 26 letters, all numbers up to 10, and did I ever tell you I finally figured out my colors? (that was probably a month or so ago, but nonetheless...)
  • I think I have reached what people probably refer to as the "terrible twos." I like to shout "NO!" and disobey Mommy & Daddy. This leads to lots of frustrating time-outs but also sweet, heart-to-heart talks about how God wants us to obey Mommy & Daddy. Lots of opportunities to talk about the Gospel: how much we need Jesus every day, and how thankful we are for His goodness and grace to us.

  • Still not a fan of swings, guys. I'll tolerate them for a minute, but oh, I'll slide down the TALLEST slide you can find! I can't tell you enough-- slides are my FAVORITE!! (which has Mommy & Daddy on the lookout for a nice wooden swingset for the back yard...)
  • I am not the world's greatest bubble blower by far. When I blow, I make the sound like this: "fffffffff..." so needless to say, the bubbles aren't flying out by the dozens. ha! We'll keep working on it. :)
  • I am finally doing GREAT with going into the nursery at church, and when "Mommy and Daddy go on DATE, they come back and getchu." (at least that's what I have to tell myself out loud repeatedly when they're away... Good coping skill, I guess.) :)

  • I've figured out how to take a few rotations on my tricycle! In no time, I'll be pedaling all over the place.
  • Mommy is thankful I am still a good sleeper. I sleep from 8:00pm-6:45am and take a three hour afternoon nap.
  • Bald or not, I am Mommy & Daddy's dream come true.
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Wednesday, April 21, 2010

6 weeks...

Don't they say that when you do something for 6 weeks, it becomes a habit? That's certainly been the case for us. Today marks 6 weeks of gluten free, baby!! Oh, it was a good reminder to go back and read my post from gluten-free, day 1 and praise God for how far I've come since then! 6 weeks later, GLUTEN-free is a piece of cake! ('though you can't HAVE a piece of cake... cake? what's cake?) :) However... the no soy & dairy part? Not quite so much yet... but we'll get there. (and now, to top it off, we're gonna get rid of eggs for a couple of weeks & see if that helps... I know- we must be crazy by this point.) :)

This morning we took Caroline to a pediatrician in town that is an MD but is also well-known and beloved for being more wholistic and seeing the BIG picture in health. She was fabulous. It's like she knew our child even before she met her!?! (she had obviously studied over Caroline's entire chart of medical records closely because we hardly even had to explain a THING!) She took all of our findings from this doctor and that doctor, and she was able to help put the pieces of the puzzle together for us and give us confidence that we are on the right track. She knew ALOT about the immune system, and how all of Caroline's issues-- the hairloss, the eczema, the gastro stuff, and her bloodwork findings related together.

Without going into too much detail & risk boring or confusing you guys, it seems like this is probably not full-blown celiac, but an overall immune system that has been attacked and needs healing and repairing. I've done so much reading on the immune system, & I NEVER knew the kinds of stuff I know now! But to keep things simple, no doctor until today told me that Caroline's iron had shown itself on the low side (Megan, does that surprise you? he he) and no doctor until today seemed to have the time or ability to look at her body as a whole and help figure out what steps will help. So PRAISE GOD for directing us and guiding us to her!

After meeting with this doctor, I'm thankful we were already on the right path with the gluten, dairy, & soy free diet. (though she said we're just now in the beginning stages of this diet and the healing process so we'll check back with her in 3 more weeks to see how things are looking.) And hopefully as her intestines heal over the next several months, we'll start to see other changes as well in her skin & hair. (fingers crossed!)

So I think after today we feel more optimistic and hopeful for the long-term! Praise Jesus! We know we've probably got a long road ahead of us in the upcoming months, but at least today we're more committed than ever to stick with this crazy, sacrificial, expensive, restrictive, pizza-lacking diet. :)

And as I watched my sweet girl gobble up EVERY LAST LITTLE BIT of fresh zucchini, squash, & red peppers tonight, I couldn't help but feel my heart swelling with love.

Tuesday, April 20, 2010

green thumb...

Yes!! It's that time of year and our family has been eagerly awaiting our chance to try a garden! Even though we've got plenty of space to do it in the backyard, the deer around here are notorious for munching away on your crops, so this year, Mommy & Daddy decided to do a small, simple container garden on our upstairs deck.

And it's my job to help with the watering each day!

I'm a woman on a mission and I love it!

Yeah, as you can see, we didn't go with the nice & pretty planters... 5 gallon paint buckets will work just fine, right? (and you know what? My guess is that the tomatoes will taste just as good...) :)

And waalah! Not the um, classiest presentation for a container garden, but hey, it's ours... and hopefully this summer we'll be enjoying lots of fresh tomatoes, cucumbers, squash, zucchini, herbs, & strawberries!

More water, please!
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Monday, April 19, 2010

egg-cellent getaway...

This past weekend Marc & I (Amy) were fortunate to get a quick, but much-needed, overnight getaway by ourselves! Caroline had a wonderful time at our house with a young married couple whom she ADORES while we zipped over the mountains to the beautiful Shenandoah Valley for the night. We stayed with some friends of ours who live on an amazing property with a river in their backyard!, so we were able to take a canoe ride on the river and enjoy some quiet togetherness.

I DIDN'T take my camera (I know, that's shocking... but what's the point when my favorite subject to photograph wasn't even with us? he he!), so the following pictures are blurry since they were taken on Marc's cell phone.

I don't know how many of you have seen the new documentary, Food Inc., but we loved it and we'd highly recommend it. There's a farmer that's featured in the movie that to us, seemed to have a biblical world view as he spoke about his profession, and we were really impressed. (people travel hundreds of miles to visit this farm- it's crazy!) Well, long story short, his farm was within minutes of where we stayed, so we decided to take a visit of the farm and pick up some good food while we were there!

So to our surprise, the worker selling the food at the farm told us that we could go gather our OWN fresh eggs. "Like, FROM THE CHICKENS!?!" I thought. (that's when you know you were raised in the city...)

Turned out to be the highlight of our weekend. :) Hence, the only camera we had was on the cell phone to capture this hilarious, and strangely somewhat romantic moment. :)

See, we had to walk around the bend and THROUGH a cow pasture, crossing over the fences, until we got to this free-range chicken house-thingy. (whatever you call them! Don't make fun of me-- I'm from the city.) Then we climbed up the little ladder and as we got inside, you wouldn't BELIEVE the cacophony of noise that started coming out of these chickens!!! (kinda freaked us out a little...)

And inside, there were chickens laying eggs in these little nesting places.

Literally, when the chicken flew off out of the nest, we would snatch up the eggs, still warm!

I don't know if this is as amazing to any of you as it was to us... again, if it isn't, just remember... we're from the city. :)

Aren't all the colors beautiful?

Wow. Here's our dozen! Next time we go, I know a certain little someone who'd LOVE to go along with us on a REAL Easter-egg hunt...

...and there was something else about our hunt that she LOVED as well!
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Thursday, April 15, 2010

songs about jesus...

...and probably the fastest, most furious rendition of the Lord's Prayer you've ever heard! ha!

These songs have taken on deeper meaning for us in recent days. He is so good, He's so good to me.

Wednesday, April 14, 2010

oh boy, no soy...

Today marks 5 weeks of our gluten-free lifestyle for Caroline. (And oh, if we could only go back to ONLY being gluten free! Now that seems soooo easy! Can ya believe it?) I (Amy) told y'all we made the switch off of milk products and onto soy about two weeks ago, and we have not seen any improvements since the switch. (to be somewhat graphic, her diapers took a turn for the worse with the soy plus her eczema/skin issues are as flared up as ever.) SO, as of two days ago, we're now gluten-free, dairy-free, AND soy-free.

That pretty much leaves nothing left to eat!! :) (except applesauce and carrot sticks...)

Dinners still feel somewhat "easy"-- bake a fresh meat (fish, chicken, beef, etc. with basically no seasoning), rice, a vegetable, and some fresh fruit. (Shouldn't we all eat like that?) But it's the convenience foods-- the animal crackers, the snacks, the salad dressings, the mac-n-cheese that every kid wants, the things you pack to give them when you're out & about, & all the packaged things that almost ALWAYS have some kind of trace of wheat, milk, or soy.

Everyone seems to mention Trader Joe's or Whole Foods to me. What I wouldn't GIVE to have one nearby! But of course we live in a small town that has neither. (Whole Foods is over an hour away in Charlottesville, Trader Joe's is almost 2 hours away in Richmond. I know that doesn't seem too far away, but with our schedule & with a two year old, that feels like a physical impossibility.) Plus it seems like every time I stock up on convenience foods she CAN have, the next week she CAN'T! Oh, I do NOT want to see our grocery bills...

Granted some of this is somewhat self-inflicted. No doctor is following us around saying "you HAVE to get off of milk!" "You have to get off of soy!" But through this elimination process we are trying to see what might be triggering some of her skin & tummy issues, not to mention help strengthen her immune system to grow some hair!

No time or energy to write more. I've got meals to figure out. I know I'm doing everything I possibly can for my baby girl and all of this will take TIME, but at the end of the day, it's just hard. Thanks for praying, friends.

Monday, April 12, 2010

Friday, April 9, 2010

moral support...

I made the trip down to South Carolina to be a moral support to my Nanny, who had surgery yesterday.

Thankfully the surgery went great and Nanny's feeling better than ever.

And how cool is it that my Nanny has a deer I can RIDE in her yard??? (isn't that heavenly for a 2 yr. old?? I think everybody ought to invest in one for their yard.) :)

Nanny, I don't know how much moral support I gave to YOU, but you certainly gave plenty of it to me.
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Wednesday, April 7, 2010

adjusting my eyes...

Today marks 4 weeks of Caroline being gluten free! (I can't believe it's gone so quickly!) 4 weeks ago I didn't know how we'd survive a lifestyle change that huge, and now I can't believe it's beginning to feel somewhat like a new "normal." Although, in my mind, I haven't quite given in to the thought that this will be a forever change. We "signed up" to try this for a 3 month period, (knowing that it could very well be for a lifetime if necessary) so at least right now I'm not looking at this restrictive eating as the rest of our lives. At least that's what I like to tell myself. :)

It's been the emotional challenges that have been WAY harder than the dietary ones. NO ONE wants to watch their child lose their hair, eyelashes, & eyebrows over a period of months until they resemble a cancer patient. NO ONE wants their kid to be the one that just looks sick when every one else's daughter has long, beautiful flowing locks of hair. NO ONE wants to live in the ambiguity about exactly WHY any of this is happening, and wonder what else you can do to get answers or at least make it STOP.

It's been a tough journey for me (Amy) personally. It's brought up so many idols & expectations in my heart that I didn't know even existed before. Facing something that I honestly can't "figure out" or "fix" has been so humbling. Sanctification (the process of being made more like Jesus throughout life) isn't an easy thing. But thankfully this is redemptive suffering.

Each Tuesday I have been so blessed to have an older, MUCH wiser woman come over to my house while Caroline naps to be what I call my "living room friend." She is so wonderful to just SIT with me, you know? She doesn't feel the need to fix me, or offer me empty advice, but she listens. She cries with me. She asks questions. She wants to understand. She helps me see into my own heart. We talk about suffering, about pain, and about how God's love and plan include that. I have gleaned so much from our times together, but in our time together yesterday, a few things particularly stuck out to me that inspired me to write and I want to remember.

A phrase that my "living room friend" used yesterday that REALLY resonated with me had to do with "adjusting my eyes." Whereas this culture will look at my 90% bald-headed child and perhaps think of words like "sick," "unhealthy," "abnormal," or "unattractive," it is MY challenge to adjust my eyes and see her as Christ sees her. Hair is irrelevant to Him. As my entire lifestyle now must be centered around "what do I feed this kid at each meal so that hopefully her body will heal and she'll grow hair again," my spirit needs to find rest and ultimately trust that THIS is how God has knit my daughter together to look. (at least for right now.) She is not lacking in anything. SHE is beautiful, regardless of what the culture around me would say. He knows exactly what is happening to her when I don't, and He is guiding all of us through this seemingly-awful journey. It's been a battle, but not just for hair or health. It's been a battle for MY heart.

To me, "adjusting my eyes" means training my eyes to quit looking at her as if she's a science project. "More hair gone today." "Eczema flared up again." Instead of looking into her gorgeous brown eyes with deep love and affection, I find myself looking for any minuscule little hair that might be growing back in on her scalp. And while it's important for me to stay on top of things that are going on in her body, I need to stop focusing on the RESULTS. I'm not called to fix it. I can't, and that makes me feel like an utter failure. I'm not called to make the results happen. I'm called to be faithful and do what I can for my child. One day at a time. (that's the hard part)

Don't you love it when you get those glimpses of grace? When your present circumstances aren't swallowing you up and you're able to stand back and look at things from a bigger perspective? Oh, may this kind of clarity carry me through the next several months, Lord! (or at least until next week maybe??? he he) Praise God for His mercy and his kindness, but especially for his LOVE. May my love for my sweet daughter be more of a reflection of HIS graciousness to me. And while I do everything in my power to serve and help her, I must leave the results up to Him.

Sunday, April 4, 2010

easter dress...

Christ is risen! Christ is risen, indeed! Hope you all are enjoying a wonderful Easter. We had a great morning at church, followed by an Easter brunch with several families from our church. (where I finally had my first Easter egg hunt! Pics to come later...)

But when you're a little girl, one of the BEST parts about Easter is sporting your pretty Easter dress! And this year, my Pop & Mamie bought me a beautiful dress & it worked out great with a hat that my aunt Cheryl got for me! (Mamie, I know you are probably dying to see the pictures!) When I put the dress on this morning, I touched it (it's kinda satin-y feeling) and said, "oooooh" and walked around like I was a princess!

And for the 3RD Easter in a row, it's now become tradition for us to NOT get a good family photo together (see here), so why should this year be any different, right? :)

Happy Easter!
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Friday, April 2, 2010

bye bye milk...

As if it wasn't hard enough to do the gluten free thing already, today we took another step toward (hopefully) helping our baby girl get better. You guessed it from the title- no more milk products.

This whole celiac world is ALL new to us! But apparently when you go on a gluten free diet, an overwhelming amount of people also have trouble with milk products, since they are hard on your intestines. (like I said, I never knew half of the stuff I know now...) SO, to help the intestines heal quickly, many people with celiac have to go off of dairy as well as gluten until things heal up. At that point, many times they can introduce dairy stuff back into their diet without a problem.

In recent days, Marc & I (Amy) had been confused and frustrated by Caroline's eczema on her neck, hands, cheeks, etc. Normally eczema wouldn't be that big of a deal, but there is a large connection between celiac & eczema, and you know that "mom instinct" that just goes off in your head? Well, I just didn't think things were right. So this morning I thought I noticed it getting redder after breakfast (which consisted of milk, cereal with milk, and an egg). I could have totally been imagining things, but to make a long story short, I did some quick online research & saw the strong correlation between milk and eczema and celiac, emailed our doctor, who immediately responded with a "yes, gluten and dairy can cause flare-ups and damage to the intestine" and then spoke with the nutritionist about how to get started on a gluten free, milk free diet.

Ugh. Can you BELIEVE this? As I'm typing this I'm wondering how this is going to happen. I mean, gluten was hard enough. But at least we could use milk, cheese, butter, and ICE CREAM! (isn't that in just about everything we eat?? Well, maybe not the ice cream...) In one sense it feels overwhelming again, like it did 3 weeks ago when we began this whole process. But in another sense it kinda feels like "well, we've come this far already, what's one more thing?!"

So it'll be soy milk for us, margarine instead of butter, and soy ice cream, I guess. (if I can find one that's also gluten free as well.) Poor kid! But the only way to know if her gut might be having issues with things is to try this and see what happens. (the nutritionist suggested trying it for 2-4 weeks before we revisit the idea.) And since giving up milk products is typical with celiac folks, I'm trying not to get too freaked out about this one. At least it would hopefully be a temporary change, because I seriously don't know how one could live life without CHEESE.

Someday I'll have to write more about the "great divide" I've seen between people who are into the whole "natural-organic-alternative" stuff (you know what I mean by that, right?) and those that are honestly a little skeptical of the whole thing. It's been quite an interesting journey as someone who was (and still is somewhat) more of a skeptic of what I'll call homeopathic-type-stuff to be brought into that world by force. And there's some interesting observations we've noticed between the two groups, but that's for another time...

In the meantime, I need y'all's prayers.
Pray for immediate wisdom in meal planning.
Pray that if this IS celiac, that these steps would help Caroline to heal quickly.
Pray that she would be restored fully.
Pray that God would keep me from despair and anxiety & bring comfort to my constant broken heart. Pray that I wouldn't struggle with feeling like such a failure.
Pray that we would grow closer together as a family through this.
And thank God for how He is at work in all of our lives.

Thank you, sweet friends.

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