poor baby...

 If you know anything about this crazy little family of ours, you surely got a laugh at this year's "all is calm" Christmas card.

There is just always something going on, you know?  If it's not one thing, it's another.  I guess that keeps life interesting... ha!

 

Right now we're back in the land of ear infections with sweet little Jameson.  After his first set of ear tubes in April, we made it seven months until another infection in November.  Then a week ago, after a looong week with a very nasty cold, (which I got next) you guessed it--- a double ear infection.

Poor baby.

(Tubes are supposed to last 9-18 months, so we're wondering if we're heading towards set number two??)

 Even on the antibiotic, it doesn't seem like one of his ears is clearing this time.

 So the doctor gave us some antibiotic drops to try twice a day in addition to the medicine.  We're hoping that will do the trick.


Thankfully, Jameson's jovial, even-tempered personality is faring well for him with all these ear problems... but he's groaning during his sleep, though, so I know they must still be bothering him.  :(  Come on, drops!


Aaaannd of course, today we're expecting the biggest snowstorm in our area in years,  (8-12 inches or more- crazy!) so there will be no extra trips to the doctor if we needed it.

 
It's so hard to know what to do with little ones who can't tell you how they're feeling.

Probably time to schedule an appointment with the ENT again??


I'm praying for this little sweet boy of mine.

four in three...

Sometimes life feels like two steps forward, one step back.


Our little guy is growing beautifully.  (He's still only in the 10-25% for his age, but we like him itty bitty!)

Today he turned three months old.


Three months ago, he weighed just over six pounds.

He was smaller than James John, the Cabbage Patch doll!


And now?  He's almost twelve pounds, towering over James John!

So even with the silent reflux stuff, the good news is that he's having no trouble doing what babies are supposed to do:  grow!  Way to go, buddy!

Several weeks ago, we switched to a hypoallergenic formula (which costs an arm and a leg, of course...) and started some medicine to help his reflux.  We figured out some other tricks-of-the-trade for helping reflux babies-- keeping them upright for 30 minutes after feeding, elevating one side of the crib, thickening his bottle with a touch of rice cereal to help keep everything "down," etc. etc.

It felt like we were getting a hold on things, and then for whatever reason, the reflux kicked back up.

Here's what's happening...

Acid from his stomach comes up his throat and even into his nose at times.
That causes his body to produce mucous to protect his nasal passageways.
Then the protective mucous gets him congested.
And the congestion moves to his ears and becomes infected.

At his two month well-visit, he had his second ear infection.

Thus, we treated with an antibiotic.  Everything looked good and clear at the follow-up visit last week.  We were relieved.

Unfortunately, just a few days after our follow up appointment, the reflux started acting up again.  And again came the cycle of symptoms.

Please, let's not head to ANOTHER ear infection, God!  was my prayer this week.

But that's exactly where we were headed.

This afternoon, just after a sweet lunch date with Mommy and Daddy where Jameson was cooing and all smiles, he came home and began screaming out inconsolably in pain.

It was awful.  It broke our hearts.

All four of us were in tears.

Even Caroline ran to the computer to type out this message:

____________________________________

Dear mom and dad

I love you so much I am not happy about Jameson’s CRY  CRY CRY!!!! :( oh no!! sorry about his cry!!

He is so FUNNY!!  Oh my goodness that’s a bad cry I’ve ever heard!!

Love,

Caroline

oh goodness I am sorry about his cry :( OH MY GOODNESS      (“HELP ME LORD GOD”)

(“ I WILL HELP HIM LAMB’S”)

Love caroline

___________________________________

And for the chilled-out, happy and relaxed baby that Jameson naturally is,
today's episode made it easy to know we needed to take him in.

Sure enough, another ear infection.

Our doctor said it's not yet time to talk about tubes.  He's too little.  She did say, however, she thinks that's where we're headed.

I know lots of kids get ear infections, and I know lots of kids get tubes in their ears.  (We'll cross that bridge when it comes.)  But it doesn't seem like those moms are quite as heartbroken and anxious as I feel right now!  Um, hello- four infected ears in 3 months??  Am I just a wimp, or is this just really as hard as it feels?  My heart is so broken for this little one!

We need to outgrow this reflux stuff NOW!

I know he'll be okay, and in a day or so, he'll be feeling much better.  But I feel like we're just waiting for the shoe to drop until the next time around, perhaps in a few weeks from now.

(deep breath)

For someone who looooves being in control, I'm feeling so helpless right now.

I just want him to be okay.
I love him so much.
No mama wants to see her baby in pain.


Praying the Great Physician will comfort and heal
my sweet baby boy tonight.

stay away from sharp knives...

If you are easily grossed out at the sight of scars, you may not want to read this post.  

Okay, you've been warned.

Thought I'd give a quick update on my hand injury. 

Anyways, the stitches are out now!  When they were removed on Monday, the hand doctor gave me the green light to try to begin playing violin that very evening...

So I pulled my instrument out, and slowly began trying to play again.  Though it hurt to vibrato, (that's where you see string players sort of "shaking" their left hands) I was SHOCKED at what my fingers were able to do the first time.  It all started coming back so fast.  

Caroline was literally jumping up and down screaming, "Mommy!  You're playing violin again!!!"  My sweet, sweet girl.

There is no doubt in my mind that it was due to the hundreds of prayers that had been lifted up in my behalf.  (and many of those were from you, dear blog readers.)

Over the course of twenty minutes, even the vibrato began coming back without much pain!  I was playing in sheer AMAZEMENT and gratefulness.  I didn't want to stop.  I've never been so thankful for the ability to play before.

It's amazing how a split second can change everything.

So here are a couple of pictures of how it looked after 17 days, just after the stitches were removed...

Such an awkward place, right between my 3rd & 4th fingers.

What you can't see is how the wound literally curves around the back side of my ring finger, too.  Fun stuff.

So now the work of recovery begins.  This morning I went to a hand therapist, who gave me a ton of strengthening exercises and ways to help minimize the scarring process.  I can play, but it's still quite sore.  I am mostly having difficulty getting my ring finger to fully extend straight, but the therapy should help me increase my range of motion.  

I'm managing just fine with normal life, but it's dumb little things that are a little aggravating right now.  

I can't clap.  It's hard to wash my hands.  It hurts to bump it or brush it against something.   

Such is life, right?  I know it will get better with time, but you can pray for the moments of discouragement that naturally come with healing.

There is so much more I could say, and perhaps I will save all of my reflections from this hand injury for a later post, but can I just say I'm SO thankful?

Thankful the Lord didn't let that knife slip just a bit further.   I could've never played again.

I'm SO much more grateful for the talent He has given me.  I see now that it's more of a gift than a right.

And I'm thankful for the extent in which He has used this situation to teach Marc and me.  Our love has been deepened through this.

But for now I think I'm steering clear of sharp knives for awhile...

the first cut is the deepest...

Dear blog friends,

There is so much I could say, but can't, as I'm now typing to you one-handed.

Many of you know this past Saturday I had an accident with my kitchen knife as I was making lunch.  It slipped, stabbing me sharply in the left hand between my 3rd and 4th fingers.

It hit an artery.
It was a bloodbath in my new kitchen.  It was everywhere.
Unlike anything I have ever experienced.
I'd even say traumatic.
And it was/is scary, especially since my livelihood as a violinist depends on my fingers.

I will spare you the rest of the details, especially for those of you like me who will pass out at the mention of a laceration.  You can imagine how "well" I did when it happened to me.

I'm being held together by lots of stitches (never had them before) and the body of Christ that is surrounding me.

Though there is much I CAN'T show you from the accident, here are a few things I can.


This is the remains of my wedding band. I've only removed it a handful of times in 13 years, and Saturday it had to be cut off me.  :(  (the good news is that I had hoped to get a new band at some point... so I guess that's going to be a good thing when it's all said and done..)


This is the former RUF student who just HAPPENED to be in town and dropped by for an unexpected visit.  Little did he know the Lord was bringing him here to clean my blood off of the ceiling and mow our grass... wow.


This is another dear former student who hopped in the car to come rescue my daughter while I was being sewn up to give her a "normal" day of playing, McDonald's, and ice cream. (that's proven to help traumatic events, I've heard...) THEN Lindsay stayed with us 2 nights to help out our family.  SUCH a blessing.


THIS is me high on pain pills.  Ha!  Just kidding.  But maybe not.  In order for Caroline to not be afraid of my hand, she put a Tinkerbell baindaid on the front and wrote "I love you" on the back.

But what is NOT shown is who-knows-how much blood I lost.

Also not shown are the countless others from my sweet little church who have been providing meals for  us all week.

Or the RUF girls who sat with me while I cried about it yesterday and prayed with me.

Or the prayers being lifted up for my recovery.

Or my sweet husband, who literally jumped up and down with joy when the hand specialist gave us the news that I shouldn't need further surgery.

Tonight, almost a week later, my finger is still swollen, bruised, stiff, and very painful.  I'm functioning moderately well, but daily life is difficult with any injury.  I would appreciate your prayers for recovery and healing.  Thank you, friends!

an answer...

The past two years have been some of the hardest for me. (Amy) While I watched my daughter and my husband each go through health issues, I have quietly been busy battling my own. As I've mentioned before, it has been an emotional and frustrating journey that has increasingly resulted in limiting much of my day-to-day abilities. In recent months, my symptoms have increased, and I have at times found myself confused, depressed, and in despair. I can't begin to describe how discouraging it has been.

I have called upon the Lord over the past 2 years. My husband recently started praying daily for a complete healing for me. A pastor in our town has been praying for my health every day. My sweet niece texted me the other day to tell me she had just prayed Psalm 6 over me:

Psalm 6

¹ LORD, do not rebuke me in your anger
or discipline me in your wrath.
² Have mercy on me, LORD, for I am faint;
heal me, LORD, for my bones are in agony.
³ My soul is in deep anguish.
How long, LORD, how long?

⁴ Turn, LORD, and deliver me;
save me because of your unfailing love.
⁵ Among the dead no one proclaims your name.
Who praises you from the grave?

⁶ I am worn out from my groaning.

All night long I flood my bed with weeping
and drench my couch with tears.
⁷ My eyes grow weak with sorrow;
they fail because of all my foes.

⁸ Away from me, all you who do evil,
for the LORD has heard my weeping.
⁹ The LORD has heard my cry for mercy;
the LORD accepts my prayer.
¹⁰ All my enemies will be overwhelmed with shame and anguish;
they will turn back and suddenly be put to shame.

I have groaned and weeped, and the Lord has heard my cry for mercy. He hears us! He really does answer prayer.

Praise be to God, my doctor called me today with results from some blood work I had the other day, and it showed that I have a severe iron deficiency. (normal is between 45-182 and I am a 10!) Now it's obviously not good that I'm so deficient, but just to have some sort of EXPLANATION as to why I've been struggling chronically with dizziness, headaches, irritability, depression, heart palpitations, & numbness among others is a HUGE answer to prayer in our family. I can't believe I have struggled for so long and been to so many different doctors before finding out something so basic.

So the journey continues... iron supplementation will begin tomorrow and we'll see if it improves my levels in the upcoming months... just wanted to keep you, our friends & family, informed and ask you to thank God with me for this answer to prayer.

accepting alopecia...

As we're settling into the world of alopecia, it's encouraging to hear other people's stories with it.

This little 6 yr. old girl gives one of the best explanations I've seen in this 2 minute video... (even now, I can totally see Caroline doing this, too!)



And while we are not avid beauty pageant fans, we can't help but admire Miss Delaware this year! (What a story to be able to tell our own beauty queen!)



The Lord is also bringing other families with alopecia into our life, and I (Amy) can't tell you how encouraging and supportive it is to hear their stories and share the same sadness and fears about it. The overall theme I hear from them as adults is that though it was many times difficult growing up, it helped make them the strong, confident people they are today. (more on this in a later post...)

As I see more and more pictures of children with alopecia out there, I am amazed at how quickly my eyes are adjusting to see beauty where I once might not have. Dare I say I'm even feeling somewhat empowered?!? to not force my kid to cover up or try to look like everyone else??? She IS beautiful. Just as she is. And if any of you think differently, perhaps the problem lies not with Caroline, but with you. (sorry the Mama Bear claws are coming out...) :)

Right now I am so determined to apply the Gospel to my daughter's bald head: we find our acceptance not in others' approval, but we rest in and know that we already have our approval in Christ. While "covering up" with wigs, hats, scarves, etc. will be an option for her at each stage, I pray that we'll only use those things for fun & for necessity (cold in the winter, to avoid sunburn in the summer, etc.) if she wants them, and not out of a place of SHAME. I want her to know there is NO shame, and I want her to have a whole COMMUNITY of people that love her just because she's Caroline. (I have a feeling she'll have more than enough fans...) :)

I know it's going to be a bumpy road. Obviously I'm still processing and accepting what the Lord has seen fit to give us. But on the other side of my grief is a mama who wants to use this trial to love my daughter even stronger than before and let IT grow me in grace, as it already is.

processing grief...

Grief is a crazy thing. Even grief over your losing kid's hair. One minute you're fine. The next, you're not. It seems like the smallest thing can trigger it.

Our Duke visit on Thursday was amazing. We liked our doctor. We don't necessarily love our diagnosis, but what a relief to finally get one! We walked out of Duke feeling encouraged and surrounded. I don't know-- there's just something beautiful about a hospital. It's like there's a spirit in the air that says "it's-okay-to-not-be-okay here." You don't have hair? Doesn't matter. Because in here? Everybody's got somethin'! That's why we're here! There's no need for people to be quiet and awkwardly stare because they know why you're there. And you know why they're there. We all need help. There's just something so beautifully leveling about a hospital. If only our churches shared the same welcome to sick sinners!

But even though the Gospel was SO clear that day as I reflected on God's new direction for our family with a likely lifetime of alopecia, I wasn't prepared for the emotional crash that would come the next day.

The grief and denial soon set in. I mean, Caroline's been bald for almost a year now, but it seriously feels almost like it's for the first time. No, surely there's something else I can DO to figure this all out, Lord. Are we really DONE? Why does my daughter have no HAIR anymore?! Why did we go 21 months with it, only to lose it all? And what does this mean for her when she's 8? When she's 12? When she's 16?? How will people treat her? How will she deal with it? How will I deal with it??

Again, she asked me, "Mommy, why did I lose my hair?" She wasn't upset. Just curious.
"Sweetheart, I don't know! Sometimes people just lose all of their hair. God doesn't want everyone to have hair."
"I mean, but where did it GO, Mommy? When it fell out, where did it GO?" she asked.
"Well," I answered, "some of it went into the bathtub. Some of it went into your crib...."
"And then where did it go?"
"Then we threw it away."
"Why did you throw it away?"
"Well, that's what you do when you lose hairs. You throw them away."
"So I can get NEW hair!" she exclaimed as she touched the top of her head.

My heart sank. I smiled at her, but inside I was torn in a million pieces. But she's not. And that's halfway reassuring.

So our Duke dermatologist called again yesterday after doing his research and actually talking with our gastroenterologist. (finally! What I've been waiting for! A day when 2 doctors will actually TALK to one another!) And their united recommendation to us was to call off the endoscopy we had scheduled for February. They don't see the connection for Caroline between her alopecia and her intestinal issues. (which have since gotten much, much better lately, by the way...) And so when I've got two well-educated DUKE doctors telling me not to put my child under and do this procedure, it wasn't too hard of a decision for Marc and I to make the call today to cancel it.

So it's over. (For now, at least. Of course, we can reconvene on things if anything changes or becomes worse.) But our hunt to find answers to all the mysterious symptoms over the past 2 years is behind us, still leaving unanswered questions in our minds. It is especially hard for me to swallow. They say the hardest thing about alopecia is accepting that it's only alopecia. For now, that's where I am.

I'm sure it's normal to feel the waves of sadness. I'm sure these won't be the last of them. It's feelings like these that remind me that things are not the way they're supposed to be. My daughter is supposed to have hair. This world is broken and fallen. This is not how it should be, and thankfully it's not how it's gonna be, either . There will be a Day FAR more wonderful when there will be no more tears, no more grief. When the world is made anew and creation is finally restored (as it's groaning in expectation even now), things will finally be made RIGHT. THAT is my ultimate hope. And it's the feelings of pain, longing, sadness, and grief that point me there.

I have no idea why God chose ME to be Caroline's mom, even though biologically I wasn't supposed to be. He knew that she would face a life of alopecia, and for some odd reason of His own, He wanted me to be the one to explain it to her. (Marc had an excellent idea for us to write a children's book for her helping her understand alopecia & I plan to do it! I'll keep you posted.) Just as I love my daughter fiercely, His love for us and for her is even more so. Even before I knew a thing about her, or ever met Megan, He was working out His loving will for Caroline. And in my times of grief, that's what gets me through.


Well, and a little of this, too...

a life without hair...

My daughter is a rock star. Plain and simple. Wherever she goes, people are truly fascinated by her. Yeah, sometimes it's because of her lack of hair. But truly, more often than not, it's her HUGE, social personality that shines through. You can't HELP but notice CAROLINE first, not the bald head.

Take today for instance. Our family made a quick trip down to Duke for a dermatologist appointment. And as the nurse is walking Caroline down the hall to our exam room, I hear my daughter telling the nurse (who is, of course, all ears...): "I'm 2. But I'm almost 3. My birthday is on February 18th. And Leah's is on February 16th. And I'm gonna have a birthday cake. What's your name?" ha! My kid may not have hair, but she MORE than makes up for it in her beautiful spirit. She is amazing. Hardly ever does a day go by where Marc and I don't look at each other and say, "She is truly an amazing girl.."

So we found a dermatologist that we LOVED today. Kinda crazy that he had bad news for us, but we still walked away feeling SO refreshed. He listened. He explained. He understood. He diagnosed. He was so respectful of our knowledge and even asked if we were doctors or nurses ourselves! (ha!) He gave me his email address and encouraged me to send him any research I could find on the connection between alopecia and gastro stuff. Here he is--the veteran at Duke University, and he said he wanted to do some research for us this weekend (!) & "hit the library" to do his homework on our behalf.

The diagnosis wasn't anything new or shocking: alopecia totalis. (loss of all scalp hair, but not all body hair) Most cases of alopecia are just genetic and have no rhyme or reason. The person is otherwise completely healthy- for whatever reason, their immune system has tricked itself into attacking its own hair follicles. Did any of you happen to see the Miss America contestant, Miss Delaware, this year? She has alopecia and prefers to go bald! (except she wears a wig sometimes for competing)

We also already knew our prognosis: not good, due to 2 factors-- Caroline's age and the extent of the hair loss. When people develop a form of alopecia later in life (teens, adults, etc.) they are more likely to see a pattern of regrowth (and potentially loss & regrowth again and again) throughout their life. The younger you are, the less likely you are to see it come back, though it is always possible. And because her hairloss is so extensive, it also becomes less likely for regrowth. (the good news is that because she lost it so young, it actually helps in her acceptance of it)

Bottom line is: we're probably looking at a lifetime without hair.

Today was the first day of the long-term acceptance of alopecia for me, most likely without any underlying cause. It's a far cry from where I've been over this past year as we thought we were fighting some type of intestinal malabsorption/deficiency. Right now that is not seeming to be the case, particularly now that Caroline has gone back on all foods and things have not really declined (nor vastly improved, either). The jury is still out on that, but I am thankful this dermatologist wants to look into that for us as well.

It does make me wonder what the past 10 months were all about... did our "nutritional therapy" help anything? I guess it certainly didn't hurt her. And for all that the Lord taught me during that time, it really was worth ALL the stress and inconveniences. (and oh, I can't BELIEVE how taxing it was on us, but when you think you have to do it, you just do it!) And to be honest, looking back, I don't think I'd change a thing. I'm pretty dang proud of myself. I gave it my best and I gave it my all. I learned SO much. I'm not the same person I was. And it was through all of that, we discovered Marc's issues with gluten. Funny that while I thought I was helping my daughter, it was actually my husband who maybe was the most helped.

Now our focus has to turn away from food and toward helping Caroline grow up without hair.
I pray she'll ALWAYS feel like the rock star that she is now!

I pray that God will give us the wisdom to know what to say and how to guide her through this at each stage in life.

I want Caroline to know that she is just as beautiful when she ISN'T wearing a hat as when she is.

I don't want her to face any shame about her appearance. She IS gorgeous, hair or no hair. (as one of our students said, "She rocks the bald!") :)

I must not let the approval of others drive my insecurity about this, but instead, rest firmly in the acceptance and justification we have from the Lord. (Not as easy to do when I see someone staring in public, or I'm around a bunch of moms gabbing about their kids' crazy hair stories, and I'm tempted to blurt out, "Oh yeah? Well at least your kid HAS hair!"...God, give me grace.)

I know the Lord has a special plan and a special place in His kingdom for Caroline. His plan for her didn't stop at her adoption. It continues on, even in times of darkness and tears. He is going to use her in ways that I never imagined. She will learn lessons about grace and the Gospel in far more powerful ways because of this. I'm not naive to think there won't be struggle and tears, but I pray that God will be gracious to us as we begin to process and figure out what this means for us going forward.



p.s. One more thing-- regarding the loss of skin pigmentation on her legs, the dermatologist said it was NOT vitiligo, but a result of bad eczema. Many times eczema can kill pigmentation, but he said it will come back! (yay!)

i don't know...

She finally asked. This morning I (Amy) was blow drying my hair, and as usual, I had a toddler climbing all over me. (When I'm putting on my makeup nowadays, she likes to go fetch her "lotion,"--aka Aquifor-- climb into my lap, look into the mirror oh so seriously, and proceed to smear it all over HER face... like she's putting on make-up, too, you see.) :)

I've known it wouldn't be long before she started asking, but didn't know today would be "the" day. And then she said it.

"Mommy, why did my hair fall?"

"What, baby?" I said, pretending I didn't hear her, just to make sure that's what she said.

"Why, why did my hair fall?"

Alright, she said it. Here we go. Okay, quick! What do I SAY? Oh, don't be stupid, Amy. You know what to say. Tell her the TRUTH, silly. (is there really any other option?)

"I don't know why!" She wasn't really disturbed. Just innocently asking for an answer. I probably could've just left it at that, but I felt the need to say, "It's alright. You're my beautiful girl. And some people just don't have hair."

Content with my answer, she went back to playing with every little piece of my make-up that I constantly remind her not to touch. And that was it.

Of course over the next 10 minutes, I was fighting a myriad of emotions: sadness, anger, self-doubt, you name it. But the truth was THAT-- I DON'T KNOW. I. DON'T. KNOW. I have NO idea why she is bald! At one point I thought I knew. I've had a hundred different theories and tried a hundred different things over the past 11 months. But now I'm done guessing. I can't do it. I'm not a doctor. I'm a mom.

If all this is "just" alopecia, then it's a genetic auto-immune response where the body decides to attack its own hair follicles, but the person is otherwise totally healthy. (no, there is no alopecia in the family history) She could conceivably grow hair again at any point, only to potentially lose it again. Or she could just remain bald for her lifetime. There is no predictability. There are very few treatments that actually work. (although the good news is that there is some exciting genetic research happening out there right now with alopecia! This past summer geneticists were able to pinpoint the alopecia gene and they were shocked to find that it was most closely linked to 3 conditions: celiac disease, diabetes 1, and rheumatoid arthritis. So now they are working to learn more about the relationship between these conditions and alopecia. Which also makes me wonder if Caroline's celiac bloodwork that initially showed some possibilities could've just been the alopecia stuff all along...)

And if this is some kind of intestinal/malabsorption thing, (like we used to believe and now we aren't so sure anymore) then we need to figure out what is happening and resolve it. (we have an endoscopy/colonoscopy scheduled for early February to rule out the gastro stuff) Off of all the restrictive diet stuff, (with the exception of nuts & seeds) she has been doing about the same as before. Mushy diapers, but thankfully not as horrific as they were before. So who knows?!? I'm done speculating for now.

I have no answer other than "I don't KNOW." And today, at least to her, that was okay. :(

decisions, decisions...

I hate making decisions.

Our follow-up appointment with the pediatric gastroenterologist (GI doc) at Duke was this week, and it was pretty much what we expected: bloodwork looks good & doesn't seem to show any malabsorption or deficiency problems, Caroline is still growing, gaining weight, & thriving, the hair loss may not be connected to the foul, loose stools, etc. etc. While it is reassuring to hear she's checking out as healthy and we're doing everything right, it gets us no closer to answering all of our questions.

The only way to KNOW something for sure in the GI world is to do an upper endoscopy & colonoscopy (under full anesthesia). It would be a definitive answer as to whether she has celiac disease (people with alopecia have a much higher likelihood of having celiac genetically), as well as show other intestinal conditions/problems such as carbohydrate malabsorption syndromes, for example. It's a relatively quick, easy, & safe procedure-- the whole procedure is less than an hour long & she won't be in any pain afterwards, but still. No parent wants to make the decision for their 2 yr. old to "go under" when it is not absolutely necessary. I can't imagine watching my daughter being rolled away sedated on a hospital bed! (If this thought makes me immediately sick to my stomach, I wonder how the God of all the universe watched as His Son was killed?) The doc said she's on the fence about whether she would recommend we do this or not. So basically it is up to us. (I just wish things were a little more clear-cut sometimes! Would someone please just tell me what to do & I'll do it!)

The last time we were given the option to do this endoscopy (with a different gastro doc), we opted to go the gluten free route to see if that would resolve some of the problems. It did, at least some of them. The frequency became normal (before it had been 3+ times a day), but the "quality" only improved for a week before things turned south again. Instead of subjecting her to an invasive procedure at that time, we felt much better about actually doing something to try to treat the problem.

And here we are. 9 months later. And Lord knows, I've tried everything. I thought I knew what was happening in her body. But now I'm waving the white flag. I give up. I don't know. I don't know if the hairloss is ONLY alopecia (an autoimmune condition where the body randomly decides to attack its own hair follicles & regrowth is totally unpredictable for every individual, but they are otherwise completely healthy) or if it's alopecia CAUSED by something else-- a deficiency or something like celiac disease, for example.

It's said that the worst thing about alopecia is the acceptance of it. That can't be more true. As a parent, I am tortured with the "why did this happen?" question almost non-stop. Is there something underlying that I'm missing??? And while there are more options to exhaust, I feel I need to exhaust them. THEN, once other medical possibilities are ruled out, I know our pain will take on a whole different kind of grieving to just STOP. And cry. And know that I've done everything I can possibly do for my child.

But now is not that time. I'm still in battle mode for my kid.

I mentioned the Mayo possibility to you guys last time, and for several various reasons, right now we are looking to work through our options with Duke (both gastroenterology & dermatology) before we reconsider that option.

And in the midst of this battle, the Lord continues to shower us with grace and provisions. My worship team bought me a gift certificate to a SPA! (never been to one, but oh, I can't think of anything better...) Our Lynchburg RUF students secretly collected Christmas money for our family and gave us a check of almost $300 towards our expenses!!! (COLLEGE students, can ya believe it?? he he) We know there are so many people praying for us near and afar, and we are so grateful. He has not abandoned us in the least. As we have struggled along the path, He has given us just what we need when we need it. Plus more. Grace, grace.

So we've got this decision to make. Pray that He'll continue to lead us. We'll keep you posted.

diagnosis, please?!?...

It's been awhile since I (Amy) updated on our health journey, partially because of the emotional upheaval it involves trying to explain it, (as you'll soon see) and partially because there's not much progress occuring. I'm frustrated and confused. I'm ready for this to be OVER. I'm ready to run to the computer to tell you all: "We figured it out!" But that's not today. Nevertheless, here's the update:

When our local doctor suggested we look nationally for a specialist a few weeks ago, it felt like a huge hammer dropped out of the sky. I don't know why. It was totally the right call for her to make, and I appreciate a doctor who is honest with you when it is time to move on. But I have literally been feeling the pain of being a medical orphan, watching as my daughter's symptoms are worsening and wanting desperately for someone to please HELP us!!!

Okay, so here's the deal. After doing her research, my doctor gave me the names of two doctors (who are actually dermatologists) at the Mayo Clinic in Rocester, Minnesota. (I know.. Mayo Clinic, right? That's awesome!) One of the doctors doesn't see children. And on the other doctor's online bio, it says her special interests include "alopecia" and "auto-immune disorders." (Okay, hello!?! Is there any question who to see?) So I called to make an appointment with the 2nd doctor, and she is currently out on maternity leave until sometime in January, so we've been put on her waiting list to schedule an appointment for whenever she returns. (they couldn't schedule us because she didn't have a return date set) As great as Mayo sounds, thought, I gotta admit: I'd really like to figure this out without the need for 3 plane tickets to Minnesota, a rental car, a hotel room for 5 nights with a toddler, & the possibility of getting snowed-in in Minnesota in January...

So in the meantime, I scheduled a follow-up appointment with our pediatric gastroenterologist at Duke Children's for Tuesday. (they were the ones that did the extensive bloodwork & stool tests and discovered the parasite infection, but we haven't been back since.) I have several questions that I just honestly don't forsee this Duke doc being able to answer, but nevertheless, I need SOMEONE to help me!

Seriously. I just want someone to tell me what this IS!? May I have a diagnosis, please?!? Can doctors stop scratching their heads at me and get to WORK helping me?? Do I have to listen to one more doctor telling me to go see someone ELSE? Can anyone just look at my daughter as a WHOLE, and if not, go GET the doctor that can help understand what's going on! I need a team of doctors to ALL sit down at the SAME table and LISTEN! (which is a plus for the Mayo Clinic-- they pull in a team of doctors who spend endless hours with you in order to give you a diagnosis and then connect you to a doctor in your own area who can help with the on-going treatment)

Whew. Sorry for the venting. If you can't already tell, I'm frustrated. Someone said it best for me the other day: Tell me what to do and I'll DO it! I'll do whatever it takes. If I just knew what TO do! I mean, I'm hearing ALL kinds of advice from well-meaning folks about what they think I should do, but honestly- they don't know. So God pleeeeease direct me to someone who does.

Before the proverbial hammer dropped, we had already decided to take a supplement vacation. We were doing too many things at one time, and so we had no idea what might be causing what. We needed to see if we could tell what was helping, what could be hurting, etc. So we stopped the zinc. We stopped the probiotic. We stopped the digestive enzymes. We stopped being quite as strict about her diet. (though we are still gluten free & dairy free & low sugar. That's certainly not hurting anything to keep her immune system strong.) The only thing we've kept up is her multivitamin.

Don't know that we had any "ah-ha" revelations through doing that, except to see that it didn't appear to be any of those things contributing to the bad poops. (alright, stop reading here if you're the type that doesn't want to hear about my daughter's gastro issues...) :) The bad poops have continued on, even after a second round of treatment for the parasite which initially helped us to see firm poops quite consistently. (which are so rare around here.)

Interestingly enough, on the plane trip down to Texas for Thanksgiving, we gave her quite a bit of nuts to snack on-- walnuts. almonds. pecans. (we cut out peanuts a long time ago when it showed up as the highest delayed food intolerance on the IGG test-- which is different than what you would normally think of as a food allergy) But the poops became even WORSE and more frequent and MORE foul-smelling than ever! (didn't think that was possible...) Anyways, a quick decision to try to remove ALL nuts from her diet has given us perfect, firm poops for several straight days!

But can anyone PLEASE tell me why Caroline's skin (complexion, little "pimples" on face) is always worse when her poop gets better?! It's like this every time. She is supposed to have a beautiful olive complexion like she used to-- she is not supposed to be fair and pale!! (this is perhaps the most heartbreaking symptom to me, even more than the hair, because to me, it makes her look sick.) Can someone also please tell me why my daughter is continuing to lose areas of pigmentation on her legs?? The white patches (vitiligo?) have spread onto the front of her legs now, not just the back of them. Can anyone actually tell me why my daughter is bald??? Okay, so it's alopecia. I get that. But is there something missing (a deficiency of some kind) that's caused it?? It's now been a YEAR. That's 1/3 of her lifetime. Oh, it's too depressing to go there...

I just don't know anymore. For the past year, I've gone to doctor after doctor. I've tried everything in my power to help my daughter. I've researched and read countless amounts of information on health conditions. I'm tired of trying to figure it out. I can't. I don't know what is happening, and I don't like what is happening.

The questions nag me every day without ceasing. I constantly wonder how (and if) this will ever end. What does this eventually look like? What does she eventually look like? When do we get to the last page in this story where we read, "And then they figured out all along she was missing ______, so after they gave ______ to her, and she lived happily ever after..." How and when does this story end? And what happens in the in-between?

Pardon my venting. I was originally going to just post the facts, but as you can see, the facts are not without feeling. But I know my God is big enough to handle all of my anger, all of my questions, all of my fear, and all of my tears. He wouldn't have included the book of Psalms in the Bible if He wasn't. Dear friends, would you please keep praying that He will guide us to the help we need and give us peace and strength to trust in Him in the meantime? I will update you all after our appt. next week.

hair, shmair...

Today marks one year since the first hairs began falling out of my daughter's head. I remember finding her pacifier in her crib completely covered in beautiful dark brown hair and wondering what that was about. I remember her picking at hairs between her fingers as they'd fall into her food at mealtimes. I had no idea what was happening at the time or why it was happening. For whatever reason, I wasn't even all that worried at the time. (I guess that didn't come until later...)

I certainly didn't expect my child would be completely bald in 10 months, or that a year later I still wouldn't really know the why of all of this. Or that I'd be cooking gluten-free, dairy-free, soy-free, low sugar meals for her.

My, how things change in a year!

I don't even know where to begin. We've had so many ups and downs that I'm honestly left questioning whether I even know what "normal" is anymore! I mean, I don't have any other kids to compare things, and I'm just sooo weary trying to be the detective, the chef, the nutritionist, the doctor, and the wife and mom as well.

Before this past year, I used to think health issues were so concrete. So fixable. I trusted physicians and big hospitals to KNOW and help. I thought I could eat well and feed my child "well," and just deal with the normal stuff that comes along in life. I never knew what a year of discouragement and heartache I would have to face. I didn't know what it was like to cry so hard that you think you're gonna puke. I've never experienced the moments of hopelessness and despair as I have this year. It is just so hard for a mom not to be able to "fix" it.

It's been a year filled with grieving lots of little things: bows in the hair, eating as a family at the ice cream stand, playing with regular playdough, etc. It may sound so dumb and I know in the grand scheme of life, it could be SOOO much worse. Nevertheless it is still very painful.

And I still don't know the why of everything. Last week our doctor suggested we begin looking nationwide for a specialized immunologist that would know auto immune conditions and the connections with dermatology. (hair & skin issues) We are waiting on her referral as she is looking into possible physicians. It felt like such a blow to hear her say, "I've been in peds for 30 years and have never seen a case like this."

I just don't understand. I don't understand why my kid is never really sick (haven't needed to give her tylenol or ibuprofin for almost a year!), she's as strong & happy a kid as you've ever met, she's growing like a weed, she communicates similar to a child twice her age, and yet she's supposedly the "sick" kid?? I just don't see it. I don't know what I'm supposed to do to help her. And apparently no one does.

What has also been discouraging is that my own vertigo issues have recently come back as well. (some of you remember I struggled all last winter with it.) Three weeks ago I woke out of bed and everything was out of control-- it was as if I was on a rocking boat in the middle of a terrible storm, and I had to grab the wall to keep from falling. Thankfully the dizziness only lasted for about 30 seconds before the nausea and vomiting set in. Since that episode, I have struggled with the constant sense of being "off kilter" and having an almost continuous vestibular migraine-- not anything that has kept me from normal functioning, but has certainly decreased my quality of life. Please, please, PLEASE count it a blessing if you are able to feel like your head is in balance with your body! It is such a gift. I beg the Lord will give that back to me soon.

My symptoms have been particularly aggravated this time around by looking at the computer screen. (which is why I have written this entire post out on paper first & am looking away as I type this as much as possible) With just one minute of looking at the computer or tv screen, I feel a headache and dizziness/spaciness come on. Ugh. Can I just try to get my daughter well without everyone's health in my family falling apart???

Speaking of everyone's health issues, Marc has gone back ON gluten for the past several weeks as he'll be having an endoscopy in a week or so to check for celiac disease. (his brother has it and so it makes everyone in his family prone to it) You might remember that he was feeling SO good when he went gluten free for a month or so. Back on gluten, he is fighting all of his old symptoms again-- fatigue, lack of energy, mental cloudiness, gastro issues, allergies & itching, etc. These were ALL much improved off of gluten. He says regardless of this test's results, (which requires you to be on gluten for 6 weeks) he will be going gluten free. I think for him, he's wondering if he'll be gluten free because he wants to or because he has to.

He's eager to be gluten free again and says that there is NO food worth eating if it makes him feel like this. Amazing, huh? But since he has to be on the stuff for it to show up on his endoscopy, we've been enjoying a "farewell gluten" tour together! (Pizzas and breads and some junk food! yummm!) Too bad he won't still be on it over the holidays! :) I'll keep you guys posted. If it weren't for Caroline's health issues, I don't think Marc would ever have figured out his own issues with gluten, so even for that, we can be thankful.

Yes, it's been the hardest year of my life.
It's also been the best year of my life, too.

Watching my little girl grow and blossom into a little person is the highlight of my life. I just love to watch her little brain tick as she learns and discovers all that life has to offer. I have a husband who is so, so good to me and we suffer through this together. We are the best of friends and marriage is even better after 11 years than it was at year one. God is growing me in ways I never dreamed. And suffering, as awful as it feels, just humbles you, you know?

I love my little family. We are richly blessed. With so much more than hair. Hair, shmair.

I know God is at work in our lives, especially when we're suffering. He works through the suffering, not in spite of it. Many of you have prayed for us and loved us in so many different ways over this past year. Thank you. Thank you for the cards, the emails, the gifts, the meals, the toddler hats, :) the hugs, and the prayers. This Thanksgiving, we have much for which to be thankful.

jesus loves your tummy...

A few weeks ago, I (Amy) got a phone call out of the blue from a former Texas Tech RUF student.

"Hi Amy. This is Sari, and I've got some good news for you." (you don't hear that everyday!) Needless to say, I was all ears.

Well, it was true. Sari (whom we sadly haven't seen in years!) went on to tell me that she has been following our blog and that she has been wanting to do something to help us out. And boy, did she. Sari said that several of our former RUF students from Tech decided to pitch in to help with the financial burden that Caroline's health situation has incurred upon us. As she shared this over the phone with me, tears began streaming down my face.

"You and Marc were always there for us, and now we're at a point in our lives where we can do something to be there for you guys. I hope that this gift will help you know that the body of Christ is there for you and loves you." (Her words were even more poignant than that, but you gotta understand-- I was bawling uncontrollably by this point...)

Sure enough. They pulled together $450 (!!!!) for our family. $250 of that was a grocery gift card, which is providing Caroline's groceries for over a MONTH!!, and the rest of the money will be used towards other medical expenses, supplements, and health food store purchases. I was BLOWN AWAY.

And it didn't stop there.

They sent some packages in the mail with presents for Caroline!...






...and Sari made a beautifully creative "book" that we'll hold onto forever.


In it, she included pictures of the students that had given and explained a little about each one of them to Caroline. Oh, you don't know how sweet it was (and is) to read to Caroline about how people all over the country care about her. (plus to remember SO many sweet times with these guys as students! We love you guys!)

Also in the packages were cards/letters from many of these students and just reading their words to us meant so much to me and Marc.


And what care package from Texas is complete without lullabies from Willie Nelson?? ha ha


And the packages kept coming!

One of the things Sari did was to tell all of the children at her church about Caroline's story during a Sunday School lesson. They all made cards for Caroline, and what a treat it was for the three of us to pull out these cards and enjoy them. Among our favorites:


"I eat vegetables too + Jesus loves you."


The note from the adult at the bottom reads: "Celia & Jenny want to send you 'flowers that are pretty like you' but they are 4 and have only 60 cents between the two of them." (ha ha!)

And perhaps the sweetest & deepest message came in this card that kinda stopped me in my tracks:


"Jesus loves your tummy."

How seemingly silly those four words are, yet they pack in a ton of meaning to me. Beautiful!

How can I begin to say thank you enough to Sari and all of our dear friends & former students for loving us in this way??? It was such a joy to know you & walk beside you all throughout your college years, and it is an even bigger blessing to watch how the Lord is working in your lives now. We are so proud of you all. Wish I could give each of you a HUGE hug right now!

Thank you for your love and your prayers for us in this journey. God is so good. And Jesus loves your tummy.

hands of love #10...

Dearest Caroline,

It's been quite a week! Once we finished the antibiotic to treat the parasite, we started seeing symptoms of yeast/candida return again, which is always the downside of taking an antibiotic. And the best way to fight the intestinal yeast also happens to be the same way to help fight parasites! (which can return due to life cycles, etc.) Know what that is?

Starve 'em so they'll die! They live off of sugar, fruit, or any carbs or sweet thing that goes into the body. So when we saw some of the symptoms returning this past week, we decided to really tighten up on an already nutritious diet for a time. Yes, it's been slightly stressful on Mommy initially, but thankfully you are still eating like a champ! (I'm sure you don't mind since it probably makes you feel so much better anyways!)

With the changes this week, we're seeing some of the "die off" poop and irritable behavior that I've mentioned on here before, so even though things are slightly worse right now, it's actually a good sign that things are working & getting OUT of the body before things should begin to improve. What a crazy thing it is to fight a slow, long-term thing with all the ups and downs and twists and turns! Thankfully, as we've said before, we see a slow climb upwards, and we pray that in the months and years to come, that will continue to unfold.

So with little or no carbs, what does that leave our family left to eat, you ask???


An organic roasted chicken with an AWESOME salad loaded with veggies. Yummm....


A snacktime of green beans & a cabbage recipe with an organic apple cider vinegar dressing. (which is SO good for your health, by the way)

And perhaps Mommy's proudest cooking accomplishment yet....


a non-dairy "ranch" dressing!!!! (ha ha) Okay, guess what makes it white and creamy... would you believe it's raw cashew nuts???? Yep! All in the blender-- soaked cashew nuts, water, and spices like basil, dill, lemon juice, etc. SOOOO easy, delicious, nutritious, and perfect to dip raw veggies in!


Another dip I made that was okay, but probably not worth doing again--- this one was made of roasted red peppers and almonds in the blender.

(sorry the following pictures are going to be blurry! I let a student borrow my good camera & was only left with a point-and-shoot)


A chicken curry over millet instead of rice. (millet is another type of grain that is more nutritious and less sugary than rice, so I'm using it and buckwheat as your grains in moderation for the time being)


A lettuce "taco" with chicken, avocado, some of the ranch dip, mustard, carrot, & cucumbers. And guess what those "chips" are? Butternut squash! Crispy and salty, just like a potato chip!


This week your cousin Johnny is here working on our air conditioning, and you are loving having him here! (of course I'm having to keep you occupied because you are wanting to jump in and help out a little too often...) But since he & his grandpa are here from South Carolina, I decided to make a regional dish that would make them feel like they're right at home...


Chicken bog! (I know... I had never heard of this stuff before, either!) But it's delish! (even though the picture is too blurry and doesn't make it look all that good) It's basically chicken, rice, and sausage cooked in together... mmmm... like warm, southern comfort food. (I pulled out the chicken & sausage for you to eat so we avoided the rice this time...)

And something else you didn't get to try this time around...


Peanut butter SQUASH brownies! Yep. SQUASH brownies. Here are the ingredients in this one: peanut butter (we used almond butter-- much better for you), 1 egg, baking soda, honey, &
pureed butternut squash!

The mixture looked so "soupy" as it went into the oven that we wondered if it would even rise! But to our surprise they turned out yummy, especially with some gluten/dairy/nut/soy free chocolate drizzled across the top!

And last, but not least, YOUR favorite meal of the week: (you were SO meant to be in this family) :)


a made-from-scratch pizza!!! (crust was from almond flour, which is technically a carb, but hey- everybody cheats a little on the weekend, right??) :)

Caroline, just in case you look back at these posts in years to come and think, "Gosh, Mom. Why did you force me to eat all of that healthy stuff?", my first reaction will be, "Because I love you SO, SO, SO, SO much."

And my next answer will be,

"It didn't bother you ONE BIT." :)

if you give a toddler a cookie...

It's funny the little things that God uses to teach us about Himself, isn't it?

Well I (Amy) know more about Jesus because of something that happened at my little library yesterday and I have weeped about it every time I recount the story to someone. Don't know if I can do it justice in such a flat medium of a blog post, but we'll see...

Okay, so yesterday is Tuesday morning, which means it's time for Caroline's 1 hr. preschool storytime hour class at our local library. We signed up a few months ago with our neighbors down the street-- Leah, (who you all probably KNOW by now if you've followed our blog for any time! ha!) Caroline's best friend, and her mom, Susan.

The class is simple, but good, you know? Just the basics-- the kids get to sit on a mat & listen to some stories read to them. They sing a few songs with motions to get the jiggles out. And they do a craft at the end. Sounds good, right? And for everything that we've been through, I can't express what it means to me just to have ONE public outing that does not involve FOOD. My kid is the same as every other kid. Besides the hat or bald head, there is nothing that makes us "stand out" or show us for the food wierdo's that we have to be right now... :)

So we show up to class and here's the conversation:
Teacher: Hi Caroline!
C: Hi, Miss Lisa!
T: How are you doing today?
C: I'm doing pretty good. I ate a hot dog!
T: (obviously confused) A hot dog?? At 10am?? It's not even lunchtime yet!

To which I just shrug it off quickly with a joke about how kids are crazy about what they'll eat & when, right? Better to just leave that one alone. Nevermind the fact that what I really wanted to say was, "Yeah! That's right! BECAUSE WHEN YOU'VE LOST ALL YOUR HAIR AND STRUGGLED LIKE OUR FAMILY HAS FOR ALMOST A YEAR AND YOU AREN'T EATING GLUTEN, DAIRY, SOY, PROCESSED FOODS, or much SUGAR, YOU ARE PRETTY MUCH LOW ON OPTIONS!! AND WHEN YOU'RE TRYING TO KILL AN ENTIRE POPULATION OF PARASITES IN YOUR GUT, YOU CAN'T EVEN EAT CARBS or FRUIT RIGHT NOW, EITHER! SO WHAT WOULD _YOU_ GIVE HER IF YOU WERE ME?!? Oh, I'd give ANYTHING to be able to chunk a handful of goldfish crackers in a bowl and be done with snacktime! But I CAN'T! So the easiest thing I CAN do is to throw a no nitrate, no MSG, GFCF turkey hot dogs that cost about 5 TIMES as much as any hot dog you're probably thinking of into the microwave & cut it up into pieces for her!! Look, I KNOW we're not 'NORMAL', okay? I GET THAT. But PLEEEEAAASE do not judge me on what my child is eating at snack time."

Um, ya think I've got some issues??? :)

Obviously she meant nothing by her comment & she'd have felt terrible had she known our situation, I'm sure-- it was simply a trigger for MY pain and MY insecurities. I share that not to make our teacher look bad, but to show the struggle in my own heart. The problem is with ME. (though it does make me wonder what things I say to people in jest, not knowing their situation?) So whatever. No biggie.

But when the teacher tells the kids during class that she brought them all COOKIES, then it was enough to make my heart sink. What?! Even the LIBRARY isn't "safe" anymore?! I can't even come to the LIBRARY without thinking of food??? My mind quickly rushes to take inventory of what snacks I might have stuffed in my purse on the way out the door. Geez, of course I didn't bring ANYTHING today! I remember. As I'm figuring out in my mind how I'll handle this situation, my sweet daughter walks up to me.

"Mommy, can I have a cookie?" she innocently asks.
(Can I just crawl in a hole and cry right now?)
"No sweetheart, I'm sorry. That would make your tummy sick right now." I say to her, waiting for her reaction.

And off she went! Back to playing with her best buddy, Leah, on the mat. She didn't question me. She just trusted me. That was a good enough explanation for her. (praise God!)

Well, then it becomes time to move to the tables for our craft, and the teacher announces she'll be passing out the cookies to everyone. In frustration, I turn to Leah's mom, Susan, and mutter under my breath, "Ugh. What am I gonna DO?"
"Did you bring anything to eat?" she asks me.
I shake my head. (and probably roll my eyes as I'm mentally beating myself up in my head)

And Susan, I will NEVER forget what you said next.

"Well, we're not gonna get a cookie either, so we can just sit at our own table."

WHAT?! Really?? Are you sure?? Your kid would LOVE a cookie! No. Your kid will have to go without! Are you really going to say no because you care about MY kid??

We move to our own table and as the girls start their crafts, I am still in shock at Susan's decision. (Susan, I know you're probably totally embarrassed by now & thinking it was no big deal, but to ME, it meant so much!) The teacher comes around with the package of glittery sugar cookies in the shape of pumpkins with sprinkles on them (you know the kind--- the ones that BECKON you to take them & eat one and before you know it, you've eaten the entire package??), and before I could utter a word, Susan says to the teacher quietly, "It's okay. We don't need one." I didn't even have to say a WORD. SHE took the awkwardness and the "blame" upon herself for us all.

Thankfully our girls were so involved in their craft projects that they didn't even notice the other kids enjoying their cookies. (thank you, Lord, AGAIN!) Then the teacher announces that next week's theme will be Fancy Nancy & we'll be having a party instead of a craft! Well, you know what I hear when she says that: FOOD. At the LIBRARY??? Come on! And once again, as I was trying to come up with some food ideas I could bring for Caroline next week, Susan stepped in and said, "You want me to just bring some veggies and hummus for our girls to eat together?"

I don't know if I can even explain how HUGE what Susan did was to me. As I drove home and my eyes began filling with tears, I said out loud, "my neighbor was Jesus to me today." That's what Jesus did. He didn't leave us in our messy situations. He JOINED in. Even as KING, He took our shames as His own. The creator of the universe came down out of all of the riches of heaven and got really MESSY in our world of brokenness. He doesn't leave me feeling like I'm the odd-man out, like I don't belong anymore, like I'm the wierdo and outcast. THOSE were the very people that He gravitated TOWARD!! If Jesus had been in the library with me yesterday, He would've done what my neighbor did and forgone the cookie. He might have even shaved his head, too, who knows?? :) He gave up every last right and desire to take all the MESS that I am upon Himself. HE became the guilty so that I could be free.

Alright. I know. It was just a cookie. But Jesus showed me more of Himself today. And as blown away and appreciative as I still am at my neighbor's generosity, it gives me a much deeper thankfulness toward a precious Savior who not only gave up a cookie, but his LIFE, for me.

good things...

I (Amy) feel like it's been awhile since I've posted any updates on things, so while I should be doing laundry and meal planning, getting ready for RUF tonight, etc., I'm going to procrastinate and write a blog post instead. :)

Physically for Caroline, things have been going rather well these days! We are still seeing consistently good, firm poop, which is a very good sign that things are working as they should. The pale complexion and dark circles under the eyes have also disappeared for now! I am holding my breath a little, though, since we've had lengths of time with great poop & good complexion before, only to be disappointed when they took a turn for the worse, you know? I'm hesitant to declare any type of "victory" over anything, but I can be thankful for the progress that we seem to be making.

The parasite medication combined with the nutritionally healing diet seem to be holding things in check... at least for now! (lots of times chronic parasite infections can relapse due to life cycle stages of the parasites, etc... yuck, I know!!) So we plan to retest for the giardia and treat it again if need be. We've also slowly brought back some of the foods that initially showed up as delayed food intolerances in the IGg blood testing: organic eggs, corn products, lemon, garlic & tomatoes, to name a few. As far as the hair, Caroline still has lots of little fine, white peach fuzz. It seems like it is very slow in growing, but at this point I'm okay with that. She's down to her last 5 or 6 previous hairs, and the day those finally fall out I will for sure be saddened once more.

But for now, we're just doing our thing and providing as many good foods and vitamins/supplements to help strengthen her digestive track and ultimately her immune system!

Here are some ways you can specifically pray for us at this point in our journey:

1) Marc is still gluten free (for 1 month!) and is feeling lots of improvements in his own health symptoms. He plans to go to a gastroenterologist and get some further testing on celiac disease before he commits to do this for a lifetime. As you can imagine, it is an entirely different stressor on ME to not only meal plan & cook for a gluten free/dairy free/soy free/ etc. etc. 2 YEAR OLD, but now a gluten free husband as well! Somehow (and some days I really don't know how!) we are making it and our bellies are full. :) I know it's certainly not easy on him when his job consists of meeting students out for lunches and breakfasts, etc.

2) As Caroline is getting older and is SOOOOOOOO stinkin' smart for her age, she's figuring out more than I'm ready for her to know about all of this. (for instance, she announces out LOUD in front of everyone at the health food store "I'm shopping for my PROBIOTIC!!" to which there are tons of big belly laughs... and while I love it that my 2 yr. old kid is so smart & can say something so completely impressive and intelligent, it also makes me sad that it has to be this way, too.) While we have no problems eating at home together, it isn't as easy in social settings now when people aren't eating what she's eating, you know? "I want bread! I want bread, Mama!..." and then I see everyone freeze and turn to me to watch my reaction... Not only does that hurt a Mama's heart to have to tell your daughter no in front of people, but it's just cause for sadness. Food is such a communal thing. Not being able to share it together is just downright isolating. And I have to keep reminding myself that I am saying no because I LOVE her and it is the BEST thing for her not to get something that will ultimately be hard on her body to handle. (as a friend said to me this week, "Food is her medicine, Amy.")

Anyways, I need to begin talking with her before these settings occur to explain that there will be foods that Caroline can have and foods that Caroline can't have because it would make her tummy sick right now. And as I've worked SOOO hard to try to normalize ALL of the past 11 months to her, I just don't want her to begin viewing herself as a "sick" kid, you know? I don't want her little 2 yr. old mind to misunderstand and start to think there is something really WRONG with HER. (so Daddy being gluten free actually is a HELP because right now I can say "you and Daddy" can't have that food.) I know she is smart and she already has vocalized to me on occasion that "that food will make my tummy hurt" when she knows it's not her food. But I'm afraid we're now reaching the point where I now have to give her more bite-size explanations on her level about why she's eating something different. Boo. I wish it wasn't this way.

3) Can I just admit that I'm dreading the holidays already???? Seriously. I know that probably doesn't make sense to those of you without food allergy issues. But Halloween when my kid can't have sugar??? Ugh- just depresses me to think about it. Maybe I'll just crawl in a hole and hibernate until January??... or an island vacation sounds better...

Thankfully, for the past few weeks I have felt much less anxiety and fear than in previous months. It has been a wonderful gift from the Lord to be able to do the exact same things in the routine of the day but without the feeling that there are 50-pounds-pressing-down-on-my-shoulders. I am so thankful for a reprieve from all of that--even if it's just for a time. It has freed me up to get my eyes off of my own problems and to serve & care for others more, which I love to do.

And even though certain things like shopping for our new collection of fall/winter hats trigger emotions of sadness or anger at how things are, I know that God can handle my little emotions. He's big enough to handle me being mad at him! And I know He's okay with that, or He wouldn't have included the Psalms in His word. And I'm in a much better "place" when I'm just grieving things rather than fearful that He's not guiding us. I have seen so much unbelief surface in my heart in the form of anxiety, and it has been slowly eating away at me for too long. Please pray that God would continue to grant me with this gift of peace and deep trust in His loving care for my daughter. He loves her even more than I do, and I KNOW that He is working out His purposes in all of us through this.

Thank you, dear friends!