Sunday, May 30, 2010

signs of improvement...

Well, it's 2am and I (Amy) can't sleep, many thanks to the cold that Caroline was so nice to pass along to me... (wasn't it so nice of her to share??) :) So my brain might not be all that coherent as I type, but you understand...

We are seeing some improvement!!! After what turned out to be one of the hardest weeks for us emotionally throughout this entire process last week, we are so encouraged by what we are seeing this weekend. (oh, the rollercoaster of emotions we ride in this...) After our doctor's visit last week, we started Caroline on a digestive enzyme (to help break up the food she's eating at each meal) as well as zinc. Who knew that proper zinc levels are necessary in healing the intestines & promoting hair regrowth, and some of the main symptoms of a zinc deficiency include HAIR LOSS (esp. eyebrows & eyelashes!!), diarrhea, and eczema?!? (you would think that at least ONE of our doctors before now would have thought to check her blood levels for zinc, wouldn't you?!?)

Anyways, zinc is a super important mineral in our bodies that can easily become deficient when you have a problem with a "leaky" gut or celiac disease. (in other words, celiac/gut issues and zinc deficiency can go hand-in-hand) So even if Caroline is getting enough zinc naturally in her diet, because there is a malabsorption problem to begin with, it may not be getting absorbed- thus causing a deficiency.

So under our doctor's supervision, 3 days ago we gave Caroline her first dose of zinc (dumped 1/2 of a capsule of powder onto a heaping spoon of applesauce- yum!). And would you believe- the next day & since then, her bowel movements have consistently been 100% PERFECT!! (I know this is gross to talk about my daughter's poop in such a public forum, but if only you knew how thrilling this is to her recovery!) I mean, we hadn't seen a single diaper like these in months. And for the past few days, it's been consistently PERFECT. AND, even in just 2 short days, we see her skin/eczema looking better, too! Praise Jesus for ZINC! :)

What does this mean? Does this mean that we can abandon ship on all of the restrictive diet stuff and just pop our kid full of zinc? (oh, isn't that the kind of "quick fix" we all would want?) Unfortunately no. Absolutely not. It's ALL of the things we're doing combined that are giving her gut the best chance to heal. (a GREAT, nutritious diet, probiotics, a multi-vitamin, digestive enzyme, & zinc) The food allergies are still there for now, and the zinc deficiency isn't necessarily THE cause of all of this, but a result of THE cause. (if that makes sense.)

So we'll need to keep on with giving Caroline TONS of good foods packed with nutrition to keep her little immune system healing and strong. (trust me- this girl is NOT going hungry! With lots of fresh meats, rice, potatoes, beans, veggies galore, & fruits, this gal doesn't even care about what WE perceive her to be "missing." Just as long as YOU'RE not gobbling it down right in front of her...that'd be torturous for anyone! Thankfully the diet isn't hard on her- just on me.) Hopefully it won't have to be too long before we'll start rotating a few of the allergen foods back in, but obviously it took a long time to lose an entire head of hair- so we'll have to be patient to let her body take the time it needs to heal. (again--- if only we could just pop a pill and poof!-- this is all over with, right? Oh, how many times have I longed to suddenly wake up from this bad dream. But God doesn't let me escape my suffering- he wants to bring me through it.)

But the good news is that I think we've hopefully turned a corner for what will likely be a long road up. And if this turns out not to be the road to recovery & we end up zooming down on the emotional rollercoaster tomorrow, (sigh) we'll manage. God, give us the grace to endure.

Many of you are praying, and praying fervently. Thank you. He is answering prayer. Hallelujah!

Now to try to get some sleep...

Saturday, May 29, 2010

potential future career paths #13...

It's been far too long! And I'm doing all kinds of exciting things these days, so let's see where my explorations might lead me in life...

A tight rope walker.

An on-site weatherwoman.


Film editor.

BP executive trying to relieve stress.


??? Now it's your turn! Y'all always come up with some good ones, so let's hear 'em & we'll pick a winner!
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Tuesday, May 25, 2010

the good & bad @ 11 weeks...

Tomorrow marks 11 weeks since going gluten-free and I (Amy) thought I'd give a quick update on where we stand health-wise with Caroline. Just before we left for Florida, we received the results from some bloodwork on Caroline's food sensitivities which showed issues with 28 foods(!!). But because we were gone all last week, we weren't able to meet with our doctor to discuss the results and talk about how everything is going... until today.

Long story short, our doctor believes the bloodwork confirms that we are dealing with a temporary problem with Caroline's immune system & intestinal permeability. ("leaky gut" as a result of a hit to her immune system) So all the steps we are taking are aimed at supporting & regulating her immune system and healing her gut. That means we're doing things like:
  • avoiding the foods that her intestines are currently showing sensitivities to (gluten, dairy, soy, peanut, and most recently we're also suspecting corn)
  • giving her goods that are packed with nutrients and that will work FOR her (fresh, organic whole foods as opposed to packaged or processed)
  • adding in extra things like protein, calcium, zinc, probiotics & digestive enzymes to make sure she's getting the nutrients that she needs & help her intestines do the work
  • addressing her eczema issues as a related issue since it's also an immune response
I'm just so thankful that after so many doctors, we've FINALLY found one that is putting ALL of the pieces together for us and looking at all of this as a WHOLE. (instead of just seeing this as a hair problem.) She's hitting things from every angle and good about giving me a "plan" to help give Caroline's body the best chance for healing itself. Of course, we trust that ultimately it is the Lord that heals, but thankfully he uses ordinary means like wise doctors and medicines to accomplish it. I pray every night that He will heal and restore my baby girl.

We've also got some more testing to do on a couple of things our doctor wants to check, but she is optimistic that all of this is more of a temporary thing as opposed to a life-long thing once we get her well. And yes, she thinks Caroline will have hair again. At some point.

So that's all the good news--- the bad news is that my sweet girl got home from Florida and started running a 102.5 degree fever & is now fighting some kind of cold virus. (she's already got enough health issues!!-- she's not allowed to have regular-kid-health-stuff, too!) :) So our hands are especially full with keeping her comfortable, PLUS since returning home, her eczema stuff has taken a turn for the worse. (remember I showed you how perfect her skin looked at the end of the week?) She looks SICK to us. Ugh- you don't even know how heart-breaking it is to see your child look like this-- blistered fingers, itchy inflamed purple and red-patches on her elbows and wrists, even red dots on her face today, plus the dark circles under and around her eyes. I know she's also not feeling well from this cold and that makes everything worse, too, but it just feels like such a guessing game. (is it environmental allergies? was it the chlorine in the pool? was it the fact that she didn't eat corn products at all last week?) Not to get too graphic, but her diapers are just depressing us, too. Just wishing we could see any signs of improvement. And for the signs to then STAY that way!

It's quite the emotional rollercoaster ride-- when she's doing well, we're doing well. When she shows signs of improvement, we feel hopeful. When things get worse like the past few days, we struggle with despair. Oh if we could just keep our eyes and our feelings fixed on the One who has everything under control & even the numbers of hairs on our heads counted! What a struggle that is for Marc & I as we feel the physical & emotional stress taking its toll on our bodies. We just all three really need and covet your prayers right now.

Thanks, friends.

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Monday, May 24, 2010

long ride home...

How do you keep a 2 yr. old occupied for a 13 hour car trip? (without breaking out the DVD player until the last 2 hours)

1. A pack of BUGS. Yep. Plastic bugs. (again, the $1 bins at Target are incredible.)

2. Food. ALOT of food. Mommy didn't realize I'd be "ready for lunch, Mama" at 7:00am! (for the record, notice my skin here before the beach, and the other pictures after a week at the beach! Oh, what a little chlorine, good sun, & a super-healthy diet will do for ya...)

3. More food. In this case, a gluten-free, non-dairy chocolate bar from Nanny!!! YUM! Thank you, Nanny! "It's good!"

And the BEST way to spend time on the road?

4. Being tickled by the students in the back seat!
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carousels & horses & airplanes... oh my!

(Here are some pics I didn't get to show you guys from my time at the beach!)

Last year, I wasn't too sure about riding the carousel with Daddy...

This year I had my own horse!

But still held onto Daddy, just to be safe.

And I BEGGED Mommy & Daddy to let me go on the airplanes! Woohoo!

Look! No hands!! (well, I had to keep one on there...)
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Friday, May 21, 2010

farewell beach...

Well, it's been a terrific week at the beach, but unfortunately all good things must come to an end as we're heading back home to VA tomorrow. (okay, it's already been 2 years since we moved, but still. That feels weird to say.)

It was so fun playing in the sand...

...and looking for seashells...

...and watching the huge groups of manarays swim SO near the shore each day!!! (don't worry- they don't have stingers. You know, we've never seen quite this much wildlife here- some people also saw dolphins and a large shark. Wondering if it's due to the oil spill??)

It's been a good conference for our students (this was part of the scene from the outdoor barbecue we had last night for dinner).

But I'll miss this life. Ahhhh....

Fun times & good memories...

But so long for now, beach.
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Thursday, May 20, 2010

night out...

Last night at our RUF national summer conference each campus got to eat dinner on their own.
But first we had to get some photos on the beach together!

Our Lynchburg RUF group! This year 8 students were able to make the trip to Florida with us and we are having a BLAST together.

You don't realize just how HARD it is to get everyone off of the ground at the same time until you try it! ha!

The restaurant where we took our students is at a place called Sandestin Resort. There's a place on the pier that has great atmosphere and a really fun live band playing.

And when you're out late at night after your 2-yr. old's usual bedtime & need something to occupy them to prevent any meltdowns, of course at that point you break out the.....

Glow-in-the-dark sticks!!! (there was a pack of 'em in the $1.00 bins at Target and this was the PERFECT time to pull them out!) As you can see from a certain someone's expression, they were quite the hit.

Here's to a GRRRReat evening out!

Wednesday, May 19, 2010

Tuesday, May 18, 2010

puddle jumpers...

Feeling MUCH better today, folks! Thank you for your prayers for us as we had a rough start to our week at the beach. We're thinking it was maybe just a stomach bug because things are much, much better today. So grateful...

I know many of you that read this blog are either parents or grandparents of young kids yourselves, so I MUST share this must-have summer item (or a great gift idea) if you are new to the "kids scene" and like me, hadn't heard of these things before...

See my floatie? It's called a Puddle Jumper and it's absolutely the perfect thing for a kid like me to wear to a pool or on a boat! (they come in different colors/themes) Not only is it considered a certified Coast Guard life flotation vest, but it doesn't fall off, it keeps me upright in the water, and it allows me lots of independence.

Mommy's friend raved about these last summer, and if only Mommy had listened sooner because she was right-- these things are awesome! (they should pay me to advertise for them, don't ya think? Well, we know a good thing when we see one...)

Now I can float on my own!

...and it's helping me learn to swim! Today I started using my arms and kicking my feet to get around the pool. I wore myself OUT with all of this new mobility!

...until somebody had to keep me still long enough for a smooch. :)
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Monday, May 17, 2010

the beach...

We made it to beautiful Florida for our students' RUF summer conference! This year we've got a group of 8 students that are joining up with over 500 other RUF students from all over the country for some good teaching & relaxation at the beach near Panama City, FL. (no worries-- no oil spill here...yet.)

I am LOVING the beach! (can you believe we saw a family of about 8 stingrays about 10 feet away from the coast this morning?!)

For weeks now I've been putting my water shoes on around the house in anticipation of this week and it's finally here!

And after the beach, I love to jump in the pool for a little dip.

Quick update from Mommy: Caroline did GREAT on the 12 hour car ride here! (with no videos until the last hour! Woohoo! Of course, the ride home will probably be a different story...) We are settled at a Christian retreat center on the beach, and our family is fortunate enough to have a small 2 bedroom apartment with a kitchenette so I can cook Caroline's meals here (plus she has a separate little bedroom where she can nap & sleep separately). Thankful to have such great accommodations!

However, this morning she woke up with some pretty severe gastro issues (that were also going on the day before we left). Um, let's just say that almost everything in the ROOM needed to be laundered after that incident... oh, Jesus, we need your help! Whatever this is, it's leaving her diaper area very "raw" and extremely painful. It's awful to see her in so much pain. Of course, that has Marc & I trying to hold it together as we're doing everything we can to love her & care for her, (while ensuring our students are having a great time, too!) but also anxious as we're trying to figure out what this is all about--- Does she have a stomach virus right now? (she's eating & drinking just fine & her energy is great just like always...) Or is this a reaction to something else? Oh, please pray for us as we're trying our best to enjoy our time here, but find ourselves struggling to get our daughter's health back to full strength.
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