Monday, August 30, 2010

two steps forward, one step back...

Ugh. Turn for the worse. Again.

The day after Duke, I (Amy) noticed her complexion going pale again. The dark circles around her eyes became prominent. And wouldn't you know, the poops went back to the yeasty kind. (if you don't know what that means, that's okay. Just trust me on it. I don't have the energy to explain it all. And face it- you're probably not THAT interested in hearing the variation of colors & textures of poop.) :) Discouraging.

But I was really posting to tell you all that some of the results from our Duke day are in, and most things that came back were normal. We are still waiting to hear back on some of the other tests, particularly the celiac bloodwork. (which I'm very interested in seeing what happens to those numbers after being gluten free for 6 months) However, one of her stools tested positive for giardia, a parasite. (I know! GASP!) Don't know how long THAT'S been in there!-- sounds kinda scary, right? But as I'm reading, I'm understanding now that it's a very common thing to have in your gut when you have these sorts of intestinal issues. And it's probably been in there for quite some time- more like a chronic giardia than an acute attack. And guess what? Giardia can cause loose stools, skin issues, live in your gut for months and months and "wax and wane." Many people don't ever know they actually have a parasite because their symptoms go away and improve for a little while before they return.

Anyways, as exciting as it may seem to figure out something that we can actually treat, it's most likely NOT the entire problem. But it's a part of the problem, and hopefully we'll see some more long-term improvement after we treat it with some medication this next week. Anyways, this may explain some of why her body's been trying to heal, but things seem to worsen spontaneously.

Who knows, though?! I'm so sick of thinking this may be "it" only to be heart broken again when things begin to improve and then fall apart again. I'm thankful, though, that it still seems like it's 2 steps forward and 1 step back overall.

I'm just waiting to wake up someday from this bad dream and it'll all be okay... and maybe my family will be able to eat gluten again. :)

Friday, August 27, 2010

hands of love #6...

So, my sweet Caroline, I finally tried my hand at baking for you this week. Now, you must realize that before all of this, I had never IN MY LIFE made a batch of homemade cookies before! (well, that I can recall-- maybe my mom remembers a time that I don't, but I'm pretty sure I've always been the type to go for the super fast & easy break-n-bake kind...) But now that we've been thrown into a world we weren't planning on visiting in the first place, I find myself enjoying creating foods that I know EXACTLY what is IN them, and I can control what is in them, and best of all: it's REAL food. The ingredients don't look like a science textbook glossary with long words I can't even pronounce!

And while we have been avoiding sugar like the plague because any little bit will literally work against EVERYTHING good we're doing for your gut to heal, you just gotta be able to enjoy life a little, ya know? :) So thankfully the baking was highly successful, sweet girl, and you LOVED 'em! Mommy made you two types of cookies & froze half of the dough for another batch later.

Prepared for you this week with hands of love...

Gluten free, dairy free, soy free, egg free quinoa chocolate chip cookies. Remember quinoa? ("KEEN-wah") It's like a healthier version of rice with lots more protein. This recipe used quinoa & tapioca flour. They weren't as sugar-y tasting as what you'd normally think of a chocolate chip cookie, but they were more "dense." Robust. Real. Yummmm. And better the second day. (I don't think they lasted past then anyways...)

Now THESE cookies were just as good as the real things! These used brown rice flour. (That's what I love about gluten free baking, by the way. It's definitely harder to do, but when you are forced to avoid wheat flour, it opens you up to a whole WORLD of delicious foods & flours that you don't realize are even out there! And plus I guess it just makes you feel like you've climbed to the top of a mountain when you can accomplish a gluten free, dairy free, soy free, & egg free cookie that is so delicious, too!) Wonder how it can be dairy free with these yummy chocolate chips? I used these.

Okay, so these are repeats from before, but here's what quinoa looks like cooked as a grain. You just eat it like you would rice.

Another repeat, but boy, this one was delish! (and too pretty not to post!) There is nothing better than a fresh greek salad with homemade dressing!

And of course since it was Daddy's birthday this week & now HE'S gluten free, too, we had to make some pizza! (here is a pic of YOUR pizza-- gluten free, dairy free, egg free, soy free)

Caroline, we love you more than anything. Your health and well being is worth every tear and every dollar. You are a gift that we treasure and we are so grateful that you have been wonderfully adopted into our family. I'm so sorry that you had to get crazy parents like us-- WE'RE certainly the lucky ones in this deal and we wouldn't have it any other way. :)

Wednesday, August 25, 2010

duke day...

Whew! From a 5:00am alarm this morning, it has been NON STOP until I just plopped down to relax for the first time at 10:15 at night. (I had to lead worship team music practice for our church just a few minutes after we got home tonight.) So exhausted, both physically and emotionally. But I will keep my promise to you, oh faithful blog readers, friends, & family, to give you the update from our morning at Duke...

It was what we expected. And for our first visit with a new doctor, I think it went as well as it could. We weren't expecting answers today. I knew that would pretty much be an impossibility. So after I talked through the timeline of events & symptoms to the pediatric gastroenterologist & showed her pictures of Caroline before the hairloss as well as throughout the past 10 months, it wasn't a shock to me when she took a deep breath and said, "You're complicated. I'm going to have to think about it some more."

We liked the doctor. She listened well. She asked good questions. She seemed interested (and somewhat perplexed, as did the 2 resident med students that were shadowing her today) but willing to help us.

She was curious to hear what a dermatologist had said about Caroline's skin issues since so many of her symptoms involve hair and skin. But the problem is that when we realized in the beginning of this process that the hair and skin issues were likely a RESULT of an intestinal issue, we headed straight for doctors that could address that root problem. So she said she could refer us over to the dermatology department if we wanted. I wanted to bed & plead and say, "You're DUKE! Can YOU just call them up and tell them to get OVER here and let's all sit down in the same room together and look at my daughter's ENTIRE body as ONE UNIT?!?" It's so frustrating sometimes how specialized doctors have to be nowadays-- they can sometimes lose a wholistic view of the body.

Anyways! She definitely saw the connection between the hair loss, skin, and gastro issues, so that was good. (she said there was a tiny possibility they were two separate things, but that was very unlikely) And as we talked, she asked if we had taken certain blood levels of this or that, to which my answer was usually "no." I told her that's why we were there-- we wanted to do a COMPREHENSIVE testing to make sure there wasn't something that we are missing. So she and I collected a list of things we wanted to test for... 31 levels by blood, and 4 types of stool tests!!!! (thankfully Miss Caroline pooped for us while we were there, so we were able to send off 3 of the 4 tests today!! woohoo! Although it was, of course, a great diaper, so I don't know if anything unusual will show up.)

When the woman who took the blood started pulling out vial after vial after vial (I think I stopped counting at 8, but Marc said it was about 12) and said "This is gonna be alot of blood," I knew I had to politely step out of the room. :) My husband is a saint, especially in situations like this where I am totally the type to turn white as a ghost and pass out on the floor from anxiety. So as I headed to the waiting room and heard my sweet girl screaming at the top of her lungs behind me, oh, it was terrible. Marc said they missed on one arm several times. (ugh! And after I TOLD her about our past bad experiences with getting blood!) Then they prayed together (at the woman's suggestion!) before trying the other arm. Praise Jesus he answered that prayer. They got the blood. Although Caroline was not able to calm herself down one bit during the entire ordeal. Thankfully when I saw her a few minutes later, she was happily picking out a coloring book and stickers, safe and sound in her Daddy's arms.

"Mommy, I got a BANDAID!! It's so colorful!!"

So it will be interesting to see what we find out from all of these tests. She is checking EVERYTHING: vitamins, minerals including zinc again, basic metabolic functioning, thyroid, iron, a celiac antibody test AGAIN to see what happened to the levels over the past 6 months on a gluten free diet, etc. etc. Some of the results will start coming in on Friday, and some will take longer to know. We are eager to know what they'll say (if anything) and I'm, of course, wondering where this will lead us in our journey...

So overall I think it was a good visit. Nothing revolutionary, nothing resolved. But we cast the net wide and I guess we'll see what kind of fish show up and go from there. I'm just so glad it's over and maybe my own anxiety can take a rest!

First RUF of the semester is tomorrow night at our house! Must rest up to be ready for 40-50 college students to pack into my basement! Thank you all again for your prayers & encouragement for us today. It is always so nice to hear from you & know that people are supporting you, even from afar. Let's hope that this testing might lead us in the right direction. (or even confirm the direction we were already taking??)


Tuesday, August 24, 2010

beneath the surface...

Okay, most of you checking in are probably interested to hear how our Duke appointment goes tomorrow morning (I will try my best to post something in the afternoon), but first I must, MUST share an article with you guys!!!

So here's the background-- as we've walked down this road of Caroline's health, I've noticed a few folks' eyebrows raising when I try to explain the connection between our immune systems, autoimmune problems, and the digestive system. I realize that when your kid loses all their hair, eyelashes & eyebrows, it's probably not going to be your first reaction to take them off of gluten, dairy, soy, and all processed foods. :) Sure wasn't on my radar! Part of what has been SO stinking difficult in this process is that even the medical community has seems so stumped by autoimmune problems! (or they go about trying to "fix" them by treating the symptoms without looking into the overall cause)

It's been so frustrating to deal with several doctors, one of whom quickly slapped on a label of "alopecia" and told us: "Go join a support group and stop looking for other diagnosis'." THAT was from a well renowned doctor that we respect very early on in our journey when Caroline's hair began falling out. (of course he never thought to ask about her gastro issues or her diet or check any kind of nutritional levels!) That frustration has made us feel alone at times, and ultimately it led us to the doctor we have now, who is very familiar with the connection between intestinal health and autoimmune issues: joint pain, hair loss, skin problems, chronic fatigue, mood disorders & neurological issues, as well as digestive problems. It's CRAZY how widespread gluten-intolerance is in our bodies and in our society, and most people are undiagnosed & just treating the symptoms rather than the cause.

Anyways, as I've been learning all this stuff (and anyone who's been around us for any length of time in the last few months knows this), Marc & I have been blown AWAY at all the connections between our food and our health. And as most people have NO idea what we're talking about, :) (and that's okay!) I've been telling people I think we are sooooo close to all of this coming into the mainstream medical community. The alternative medicine & autistic community have been saying this stuff for years, but the mainstream wouldn't hear it. Until now.

Praise God that TODAY the Wall Street Journal posted a GREAT article about celiac disease & gluten sensitivity & its link with autoimmune issues. This is exactly what we have been seeing with Caroline's health (and not to mention a huge improvement in Marc's symptoms in just under one week of him going gluten-free!) and finally it's getting out there!!!

Chances are that you or a loved one could be helped with your own health issues by taking a look at this, too! (that's my hope in posting it! well, that and holding out hope that I won't be looked at like I'm a freak for the rest of my life! ha ha)

Here's today's article. It is SO good.

We covet your prayers for our big day tomorrow. Thank you friends.

Monday, August 23, 2010

sing the Gospel...

I looooove to sing the songs we do in RUF!

Saturday, August 21, 2010

fashion forward...

A girl like me can't have too many hats these days, right?

...and we just got another CUTE one in the mail yesterday!
(Thank you sooo much, Lori!)

What'dya think? Is it ME or what!?

We love a good hat around here. :)
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Thursday, August 19, 2010

the one who needs help...

I (Amy) hate admitting I need help. It's awful and it's humbling. Recently I had a friend (you know who you are!) who loved me enough to confront me on this very subject. She lovingly rebuked me for how I pretend I can hold it all together and not be direct with people to tell them, "THIS is what I need." And she is so right. I think we all struggle there. But maybe it's that I just want to appear like I've got it together, or maybe it's that I don't want to burden anyone else with my problems (people have enough of their own anyways!), or maybe it's falling into an old stupid stereotype of what a "pastor's wife" should be... I'm pretty good at admitting that things are pretty hard right now, but I wouldn't go as far as to actually ask YOU to help me with it, you know?

In this process (which will be a year in November of when Caroline's first hair started falling out), recently I think I have reached somewhat of a "numb" state emotionally. I've gotten in a routine, I know what foods Caroline can and can't eat for now, I know what that means whenever we try to go out anywhere, and I'm surprised at how our life as a family has just sortof morphed into a new "normal." There are things that we used to be able to do that were so easy back then, (like running out & grabbing food while we were out) but everything is just different now. Besides, this has been SUCH a roller coaster ride of ups and downs that I think I'm just finished with getting on the ride altogether if I can avoid it.

But as we're preparing to take Caroline down to a pediatric gastroenterologist at Duke next week and I'm busy making timelines of this past year and pulling out old pictures to show them the progression of everything, (yeah, I'm that mom) I've been taken out of my numbness and it has hit me again. Hard.

Words cannot describe my feelings as I saw an old picture of my precious daughter with dark, curly hair. (it is WAY too painful right now to hunt one down to put on this post) It is utter sadness. It's longing for another time. It's wishing the present weren't really happening. In some ways it's been a death of a dream that I didn't realize I had, you know? She's supposed to be DARK! She's supposed to have dark brown hair, dark eyelashes and dark brown eyebrows with beautiful olive-complected skin. I'm supposed to be able to shampoo her hair in the bath. I'm supposed to teach her how to use a brush. I'm supposed to be putting it in ponytails or bows. I'm supposed to be able to walk into a public setting without fear of how she'll be perceived if she's not wearing a hat. This is NOT the way things are supposed to be. Period. And as I have slipped into this new normal of a gluten-free, dairy-free, soy-free, yeast-free, blah blah-free life with a bald headed child who is as thriving, growing and active as ANYBODY'S kid, I've found myself just DOING what I need to do for her without looking back.

Until I have to, like the past few days. When I look back, it's heartbreaking. And when I look ahead, it's terrifying. (so I think I'll take the numbness of the present back, please??)

The past few days, even though her poop has actually been going great, (sorry, I know not all of you wanted to know that...) MY emotional state has been crumbling. I suppose there are just "those" times through grief and major life changes that things hit you all over again. I've been crying at the drop of a hat and feeling the weight of the emotional stress combined with the demands of a day. Everything just feels like a large weight on my chest sometimes. There are times I just want to lay down, hold up a white flag, and say, "Okay! I give up! I can't do it!" (but instead, I go write a blog post like this one! ha!)

Finally got to a point last night where I knew I needed help. And right away. So this morning I hesitated before I picked up the phone and started calling a few precious families in our church who I knew would be warm and welcoming... and through tears, I asked for help.

Well, wouldn't you know... my friend was right. People want to help. People want to share your burden. People don't know what you need or when you need it. But gosh- when you actually TELL them what you need, it's amazing how much help is available out there. There are so many families in our small church right now going through painful or difficult times, and I think about them on a daily basis. I hate it that I am not in a position to be able to serve them well like I would want to. I do what I can, but it is soooo lacking compared to what I WANT to do for them. I just can't right now. And I HATE that. I don't want to be the sufferER right now, I want to help bind up the broken-hearted around me. I want to take meals, hold babies, offer babysitting for other families, and sit in living rooms with folks that are struggling.

But for whatever reason, the Lord has given ME a season of life to be the one who needs help. And I'm sure He's using this to grow me WAAAAY more than I ever would have had Caroline grown all the beautiful, flowing locks in the world.

Tuesday, August 17, 2010

hands of love #5...

This week's "hands of love" came in the form of food AND a visit from family! My aunt Sharon, cousin Laura, & cousin Callie all came to visit us for the weekend!

And since my cousin Callie just so happens to be on the same diet as I am (and experiencing lots of her own symptoms improving!), mostly everything we'll be showing you is thanks to her! (when 2 people with food issues/restrictive diets get together, there is nothing more fun than sharing your recipes together in the kitchen! We cooked up a storm!)

She showed us how to make homemade hummus AND homemade crackers! (made of flax & teff flour, I believe...)

We made a beef stew using a TON of different vegetables. (some I'd never even heard of before-- well, "they"'re in there!)

Some gluten free, dairy free, yeast free, egg-less almond bread. (almost more like a cake- it was good!)

And yesterday I (Amy) made some thai beef cooked in coconut milk with spinach & orange peppers over millet. (millet is the rice-looking stuff.) I know- I'd never heard of millet before, either! But it's another gluten-free grain and is pretty good, just like rice. This dish tasted bland to us at first, but as we kept eating it, we both noticed that as we adjusted to it (& didn't expect the tastes of the usual American diet-- lots of salt or sugar), it became better tasting as we ate. Plus we actually felt GOOD after we ate. :)

Interesting tidbit to mention here: in God's providence, Marc's brother was diagnosed with a severe case of celiac a year before this intestinal stuff began happening to Caroline. So thankfully our family was very supportive & understanding when we went gluten free for Caroline. Since having more gluten free meals around our house, Marc is also noticing a HUGE(!) difference in his own digestive symptoms with the removal of gluten. (you wouldn't believe how many people's health-- even those without digestive issues-- could be helped by going gluten-free since wheat/gluten tends to aggravate the immune system, which in turn affects every aspect of our bodies) And since celiac runs high in families, I think Marc might be on the verge of giving it up altogether. (does this mean I'll never get to eat bread or pizza again?!? Please save me!!)

Loved having you here, girls! Come visit us again real soon!
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Saturday, August 14, 2010

don't put me in a box...

Okay, hands DOWN the best purchase my parents have EVER made for my room -- this bookcase/room divider from Ikea!! (Pottery Barn has one like this for around $1,300 & Ikea's is $129! They come in different sizes, as well as a brown/black color, too.)

And I loooove it! I tell guests in our house, "Do you want to come see my bookcase?" I just stand in front of it and pick out my books to read throughout the day.

Oh, it's so fabulous. There really are no words for the sanity this has brought my Mommy. She loves all the storage it provides. All my toys have a PLACE. (It's amazing what you can fit in those baskets & don't have to look at all the time.) I can see all of my books at one time. AND, if I want to knock them down, at least they're separated into different "cubbies" so it's not the entire shelf that has to be picked up! This is a piece of furniture that will grow with me, too-- I will be able to use it in SO many ways as I grow up, as I'm a teenager, even as I go off to college, as I get my own apartment, etc. I am going to love this thing for years to come.

But don't put me in a box, people.

'Cause I've already put myself there. :)
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Thursday, August 12, 2010


At one of the parks across town, they've just put in a new "sprayground."

And as you can see, my best friend, Leah, & I RAN with excitement through the parking lot to get to it! Woohoo!

It took a little while to get used to being sprayed...

but it didn't take too long!!

We'll definitely have to do this again, Leah.
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Wednesday, August 11, 2010

FORM matters...

It's probably time to give another health update, as things have literally been changing by the day and sometimes by the hour...

In an earlier post, I (Amy) explained a little bit about the medication that we had to start following the antibiotic to help restore the good bacteria in the gut & fight the bad stuff. And as I said, it was hard to watch this medicine go to work because things got initially REALLY BAD, and that was supposed to be a good thing. Here's an example of what happened that first week to "show" the doctors it was working...

These skin rashes that crawl all the way up her legs (which have been around for awhile & are related to all of this gut stuff- sometimes they've been inflamed, and sometimes not...) became VERY inflamed initially with the medication. It looked awful, but thankfully they didn't seem to bother her that much.

The poop (which to us is the main indicator of her gut health) had STILL not gotten back to the great ones we had been having when we started zinc initially. Let's just say they were extremely inconsistent looking, would have undigested food in it, & were pretty gross & mushy. (not watery) We have been discouraged for the past month about why things weren't getting better.

Then, just this past week, to our surprise Marc & I noticed the skin on her legs had changed again to this...

loss of pigmentation (white spots & patches) on her legs & arms. It scared us. So after a trip to the doctor and a BUNCH of research and retracing all of our steps over the past month, we had to go back to what we KNOW is going on. And that is that something (whether it's celiac or something else) has caused a severe zinc deficiency in my child. A nutritional deficiency (particularly zinc) is very common with intestinal/malabsorption problems, but our case is probably more severe than most! Signs of a zinc deficiency? Hairloss (including eyelashes & eyebrows, which have now grown back!), skin lesions including pigmentation issues, & diarrhea are among the top symptoms...

So we were still giving her the same amount of zinc as we were when we were seeing good consistent progress in her poop, so why wasn't it good again?? That got me researching what the best ways of absorbing zinc were. (because I knew she was GETTING it-- I'm still seeing little white fuzz come back on her face/side burns & arms-- but for some reason I don't think enough of it was actually absorbing...) And wouldn't you know that the 2nd bottle of zinc that we had started (right around the same time as the medication) was a different FORM of zinc, one that is apparently not as easy for the body to absorb!!!


Don't you know that got us running to the health food store as fast as we could the next day to try out our new theory!!! We upped the dosage from before just a bit, too. (with our doctor's permission) And sure enough-- the first poop afterwards was near perfect. Night and day difference. The next two (sparing you the details) were obvious to us that the medication was doing its job, and just today, another perfect one again. The past two days her complexion has come back beautifully, too!!!!! (making the white places on her leg not look quite as noticeable, but our doctor said that it may take 6-12 months for the cells in the skin to replace that depigmentation once it's been killed... ugh. Of course, who knows what's in store for us...)

It's still probably too soon to "call," (especially on THIS roller coaster ride) but good GRIEF! Who KNEW that just changing the FORM of zinc would make THAT much difference!?! Really?!? Apparently, the FORM of zinc matters!!! (kindof aggravating when I think of how far down the road we potentially might have been if we hadn't gone with the cheaper bottle at the vitamin shop closer to our house, because of course they didn't even CARRY the better form of have to drive across town to find that...)

But we're seeing good things again! Thank you for praying for us. Pray this will continue.

We've scheduled an appt with a pediatric gastroenterologist at Duke University in a couple of weeks. While we feel good about the local care we've been receiving, we certainly don't mind getting a 2nd opinion from a top-rated hospital. I am praying that they may help us put some of the pieces of this puzzle together for us, perhaps do some more extensive bloodwork than we have gotten thus far, and give us some more concrete answers. (for example: we know alot of this is related to a zinc deficiency, but what exactly caused the zinc deficiency in the first place?)

It's funny (and a little sad to me, too) to hear Caroline verbalize some of her daily schedule surrounding her health:

"I need a little vitamin [i.e. digestive enzyme] and a big vitamin. [i.e. multivitamin]"
"Mama, is that my probiotic?" (ha ha-- what kid says THAT?!)
"I'll take my medicine." (as she sticks the oral syringe into her mouth & pushes on the end to take it all by herself)
"Zinc makes me stronger!"

Yep, apparently the form of zinc matters.

And this gal doesn't mind one BIT. :)

p.s. and of course not 5 minutes after I published this post, we had another not-so-good poop. :( Figures...
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Monday, August 9, 2010

what i do at two...

Here's a peek into what I'm learning & doing these days...

Saturday, August 7, 2010

hands of love #4...

Sweet Caroline, it isn't an easy change to become gluten-free, dairy-free, egg-free, soy-free, peanut-free, etc!

But we love you more than you'll ever know and Mommy & Daddy are doing everything they possibly can to help your tummy heal by giving you foods that will be gentle on your intestines and strengthen your body.

Prepared for you this week with hands of love...

One of your favorites... grilled salmon!

A chicken quesadilla. (used corn tortillas this time, but there are also rice tortillas we could use)

These fettuccini noodles are made from beans and they were DELICIOUS! (got 'em at the health food store & threw them together with some diced chicken sausage & fresh sauteed veggies)

And if any of you out there (particularly with babies or young toddlers) are interested, this is a GREAT introductory food for your baby. (similar to rice cereal-- but it's buckwheat. I know- the name "buckwheat" doesn't sound like it'd be gluten free, but it is.) At our house, we call 'em "grits" & Caroline looooves them for breakfast. (you can doctor them up as much as you want with cheese, butter, bacon, shrimp, etc.)

They're great to cook up a big batch & then pour it in ice cube trays. Then if I need them in a rush for breakfast, I can pull a few of 'em out & heat them up in the microwave.

Although this may not look too appetizing, this "shepherd's pie" was really good. Obviously there is no crust on it, & instead of using mashed potatoes, I made the cauliflower mashed potatoes (see earlier post) so that you got another veggie rather than a starch. At the bottom of the "pie" was ground beef, fresh green beans & diced zucchini. (I made several individual pies & froze the extras for later!)

And probably the food you'll thank me for the most...

French fries! (yes, those are YOUR fingers reaching to grab one because you couldn't wait long enough for me to take a picture before you tried one! ha!) Kinda overdone on the first try, but hey... dipped with organic mustard, you couldn't stop eating them!
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Wednesday, August 4, 2010

the big picture...

I (Amy) just got back from a WONDERFULLY refreshing 2-day getaway with my husband!! Nanny & Papa met us halfway & took Caroline back to their house for a few days (where she had LOTS of fun!!) while Marc & I stayed in a hotel and got to do whatever WE wanted!!! I think as a parent (of young kids, especially), you become soooo locked into the "schedule." There are so many responsibilities in a given day & you've just naturally re-arranged your entire day to meet that schedule. And then... we're given a day without a schedule!?! REALLY?!? We can go to a movie during "dinnertime"??? We can shop at Ikea for hours because there's no fussy toddler throwing herself on the floor because she's ready to go?? (not my child.... ha ha) We aren't bound to our room from 1:00-4:00pm for nap or 8:00pm-6:00am at night??? Do you see the FREEDOM???

And so we did! We shopped. We ate out. We went out for pizza at 9:00 at night!!! Just because we COULD!! We slept until 9:00 in the morning! It was glorious!! Thank you for the best gift you could've given us, Nanny & Papa! A chance to ENJOY life again. And breathe.

With all we've been going through & the demanding cooking that it requires, there has just been no break. And getting away was sooooo good for my sanity. (can you tell?) :)

As Marc & I talked across the table at dinner one night (yes, we were able to have real, adult conversation as opposed to the usual tag-team-to-keep-a-certain-little-one-in-her-chair-and-eating-what-she-should-without-her-getting-upset-and-screaming-so-loud-it-upsets-everyone-in-the-restaurant type of conversation), we started thinking back to how all of this health crisis started with Caroline. As we tend to look at what IS today, we forget to keep the big picture in mind. And that, too, was encouraging.

I forget that before all of this gluten-free, hardcore nutrition stuff, I had a child who consistently had about 4 soft, mushy diapers a DAY. (sorry if that's tmi for you.) That was for as long as we can really remember. She was our first child, so we didn't know anything was even wrong at the time. Her complexion started looking horrible at some point. Pale, pale face. Red patches on her cheek. Dark circles under the eyes. I couldn't see it well at the time, but as I look back in pictures even before the hair started falling out, you could see it in her face. Something was going wrong in her gut long before the first hair ever fell out. And when it started falling out, it slowly fell. And fell. And a few months later, every eyelash and eyebrow was gone.

And as I get caught up in the day-by-day issues (she still has dry, inflamed skin patches on her legs that come and go, the few remaining hairs from before on her head are still falling out, poop is not as firm as it was a month ago, etc.), there is still progress in the long-term. She has 1-2 bm's a day. Good. She has eyelashes and eyebrows again! (even though they're white right now, I'll take 'em!) She has little tiny white peach fuzz on her head that can be seen in the right light. Good. Her complexion and overall "color" look much more healthy. Good. Something is going in reverse in that little body of hers. It's just a lot slower than we'd all like it to be.

One of the things I looooove to do now on a long date is to go to a bookstore with Marc, pick up all the books dealing with autoimmune issues/digestive disorders/ etc., and then sit down in peace and quiet together, perusing the pages for more ideas on ways to help my sweet daughter. I've only been afforded this opportunity a couple of times in the past 6 months, but it is wonderful when I can. Well, this time around as I looked through numerous books on helping the intestines heal, I couldn't help but be quite proud of myself at almost every step of the way... "yep, I'm doing that!" "Yep, we're doing that, too!" It was so encouraging--- each page seemed to scream at me, "Amy, you're on the right track. You're doing great."

Sometimes it's just nice to get away, get a fresh perspective on things and remember the big picture. And the even bigger picture is that this suffering is not an end in itself, but a means toward glory for His purposes and His glory. He is accomplishing great things, even among the pain and sacrifice. And I'm thankful for the moments like this when I am able to feel it is true, even though I know it is true regardless of my feelings. I pray that as I come back into the "real world" of responsibilities--starting in less than 8 hours when my sweet princess will awaken-- that these things will be just as clear to me then as they are now. Sweet dreams!

Sunday, August 1, 2010

at 29 months...

(is it 29 months?? we can't keep it straight... I think we stopped counting after 24 or 25... but you get the idea!) All these changes in a MONTH!? It's hard to keep up around here!

  • I am all energy & ALL vocabulary! New language things I figured out recently: using the word "also" and "too" in a sentence... saying "Well, I have to do ______."... speaking an entire paragraph to describe what happened somewhere... counting to 20 (except I usually leave out 16-- who needs it anyways?). Mommy & Daddy are blown away at all the things that come out of my mouth each day.
  • I've also taken to bossing people around, too. I like to tell Mommy exactly how to make my cereal in the morning. "Mommy, you get the spoon. Mommy, you pour milk on it. Mommy, you put calcium in it. (ha!) Mommy, you get your cereal and sit down right here." Mommy has to lovingly tell me, "Sweetheart, I know what I'm doing. I know exactly how to take care of you and I promise I will do it." And then Mommy realizes that's probably the exact same way she approaches the Lord, too...
  • I loooooove music. I love to move to it. I love to sing it. I love to listen to it. (And my pitch is pretty good, too!) You'd think that I'd be able to SAY what I love so dearly correctly, but no--- it's still "moogit." ha!
  • When I need to be changed, I literally CLIMB up onto my changing table & lay down for Mommy. (um, ya think potty training is around the corner??)
  • I have mastered doing a sad face (it's pretty cute), a happy face, and a surprised face. Currently working on a silly face and an angry face. (hard to do when you're having fun, though)

  • Every lady's gotta love accessories, right? Well I'm no exception. Usually a trip to church means I want to wear my bracelet, my pearls, & my purse filled up with pennies. :)
  • Whenever I'm ready to go somewhere (even if it's not in Mommy's plans, but in mine!), I rush back to my room, get my flip-flops, hat & purse, put them on, then run back to the kitchen and yell, "Mommy! I'm ready to go!!!"
  • I'm also just beginning to get a tiny bit of humor-- I'll purposefully say the word "dark" as "ark" to be silly & make Mommy correct me. :) And I like to sing one repeated word to a tune I know, like "dinosaur dinosaur dinosaur" to the tune of "How Deep the Father's Love for Us," for example.
  • In the car, I watch the traffic lights like a hawk! I'll tell Mommy when it's green- "Mama, it's green so we can GO!" or when it's red.

  • I LOVE a craft project now! (for this one we crumpled up the papers & glued them on a paper to make a flower) I get very serious, but love every minute of it.
  • It's a constant struggle for me between wanting to do something by myself independently and whining to Mommy to help me. (the life of a toddler, right? It's like Jekyll & Hyde!)

  • I'm starting to understand the concept of pregnancy & being born. I love to look at the pictures surrounding my birth & read this book that Mommy made about my birth & adoption. When I see this picture (above) from the day before I was born, I talk about how I came out of birthmommy Megan's tummy! And whenever someone Mommy knows is pregnant, (like her friend, "Miss Kelsey," at church who is due with baby Maggie any minute!) I like to talk to Mommy about how "she's got a baby in her tummy!"
  • And as I look through the pictures of when I was a baby, Mommy thinks it's funny to hear my commentary (which is obviously what I've heard before): "Awww!! Look at that little baby! Look at that little foot! Awwww! That's SOOO cute!" etc. etc.

  • My favorite time of the day is "tickle time." After I get my pj's on & my teeth brushed (which ALWAYS happens while Mommy sings "10 Little Indians" to me, mind you), our family usually plays on Mommy & Daddy's bed for a few minutes and I LOVE to get tickled!
  • Hey- there may be no hair on my head, but you better believe that I am COVERED in sweetness and personality. :)
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