Tuesday, September 24, 2013

My Kids Have Celiac Disease Chapter 2: Community

(Also see: My Kids Have Celiac Disease Chapter 1: The Diagnosis)

My first post-diagnosis shopping trip was awful. I'll never forget how it felt, mom of a newly diagnosed celiac (not to mention another whose positive test result would come a month later) just wanting to help my kid feel better and heal...but not really knowing where to start. I was standing under the glare of fluorescent lighting, tears in my eyes, blurring my view of the towering shelf of overpriced gluten free products. I was completely overwhelmed. I must have looked it, too, because a woman tapped my arm and said, "First gluten free shopping trip?" She ended up walking me through the gluten free products on the shelf, giving knowledgable reviews as a veteran celiac mom. She gave me a pocket-sized book from the Celiac Foundation. She gave me her phone number. Her kind interaction encouraged me more than anything else could have. It gave me hope that other families were not just surviving, but thriving with celiac disease.

A couple of weeks later I contacted a friend (hi Vicki!) whose son has celiac disease, asking for advice.  She called me and shared her favorite kid-approved recipes, tips, and products. My oldest daughter has been exposed to gluten twice since diagnosis, and reacted severely. I make a special, safe snack every time I drop the kids off at church or a birthday party. I pack lunches just for day running errands. I read every. Single. Label. I bought a new toaster. She's the only person who gets it all, as a mom who has been there before.

Just last month another celiac mom friend (hi Stefanie!) tagged me in a Facebook post. "Look what I found!" A new gluten free pizza crust had hit store shelves, much to our mutual joy. In fact, her specific comment was "Dancing in the aisle!"

Today, at the International Celiac Disease Symposium in Chicago, a bad apple of a speaker nearly ruined a day filled with intelligent, helpful talks. He falsely claimed that occasional, moderate amounts of gluten are fine for celiacs, that celiac disease is preventable through environmental factors, and that people who worry about gluten "especially women" are obsessive. (That's insulting to me on so many levels. I really don't have anything else to say about such ignorance.) At the end of the session, a microphone was available to audience follow-up questions. I screwed up my courage and walked up. I asked for clarification about environmental factors, since my kids don't have any of the common risks (specifically, they were exclusively breastfeed for 6 months, late introduction of grain into their diets, and they aren't c-section babies). For one, he didn't listen to the question (that wasn't that insulting - he wasn't paying attention to anyone's questions). Also when he did, he didn't understand it, so he didn't answer it. Everyone in the audience and the other speaker (who was awesome, by the way) knew he wasn't getting it, but I gave up and made my way back to my seat, visibly upset. Ok, I was crying like a weenie. A kind woman named Connie has been diagnosed for 17 years stopped me on my way to my seat and told me that basically that guy was full of it (I agree).

I sat down, and a psychologist who is a celiac patient and a mom of a newly diagnosed 8 year old tapped my arm. She had tears in her eyes and said "This is not your fault. You couldn't have stopped this." She looked into my weepy eyes and said "I get this too," referring to the heartache of seeing your child in pain, saddled with a lifelong condition. She gave me her card and asked me to email her.

After the talk was over, a dad from New York stopped by my table and encouraged me to not blame myself. His wife feels guilty for introducing grains a month earlier than recommended. Their 3 year old daughter was diagnosed last year. He said, "You couldn't have stopped this. It's not your fault."

Encouragement, support, and sympathy from people who get it has been invaluable these 11 months. This disease takes up a large chunk of my thought and time - not because I'm obsessive, thankyouverymuch - but thanks to the time, trouble, expense, and effort of a 100% gluten free diet, my kids are healthy. And that is 100% worth it.



Friday, September 20, 2013

My Kids Have Celiac Disease Chapter 1: The Diagnosis

**I'm just a mom with no medical training whatsoever. The reason I'm sharing this story is to raise awareness for celiac disease and encourage people to get tested. Don't substitute this blog post for a conversation with a doctor.**

Chapter 1: The Diagnosis


At Ember's 3 year old checkup, our pediatrician and I were worried about her lack of growth. In fact, she hadn't grown over the past year at all and had dropped to the 6th percentile. For the first time I heard the label "failure to thrive" mentioned. We discussed her diet, and I brought up some concerns I'd been mulling over.

"She has the healthiest diet of any kid I know. We eat whole foods, lots of lean meat and whole grains, she'll eat any fruit or veggie I serve her, and she drinks water almost exclusively. But..she won't eat bread. Or noodles. Or cookies or muffins or cake. I'm starting to think she has a wheat allergy."

Her doctor looked at me seriously. "Does wheat or gluten sensitivity run in the family?"

"On my husband's side, yes."

"Let's test her for celiac disease, to rule it out, then go from there."

A week later her test came back positive. A month later so did Katelyn's (4.5 years old at the time).


As soon as we got the results, I took her off gluten, which is not what you're supposed to do. You're supposed to wait for a specialist to confirm the diagnosis with an endoscopy. But she was so frail and sickly and now that I knew what was hurting my baby, I couldn't help it.

The first time I cried about Ember's diagnosis was after Texas Children's Hospital called to register her as a patient. My kids have always been very healthy - we eat clean and rarely get sick. I had taken it all for granted, and I realized I had no control over this.

The evening before her first appointment with our gastroenterologist, my in-laws came over for dinner, then took Katelyn and Evelyn home to spend the night. As they pulled out of the driveway, Katelyn told my MIL shakily, "I'm going to miss my sister." I hadn't realized that they had never spent a night apart since Ember was born 17 months after Katelyn.

The next morning I drove downtown in rush hour traffic. Dane had gotten only a couple hours sleep after working into the wee hours of the morning. I woke him as we neared the medical center so he could help me figure out which building held the Texas Children's Hospital gastroenterology clinic. We took a few wrong turns in the maze of brightly decorated, wide halls, but that was probably good because it gave me some perspective. There were parents there with much sicker kids than mine.

Dr. Fishman was kind and friendly to Ember. And he was extremely respectful to my motherly instinct. We discussed the major lifestyle changes that were upon us, scheduled an endoscopy for later that month, spoke to the nutritionist, and made our way home.

A week later we cancelled the endoscopy (here's where I remind you that I'm NOT a doctor, and to not take any of this as medical advice). It just felt unnecessary. She obviously had celiac disease. Her symptoms were clear and her antibody count was very high. We decided to make another appointment to discuss it further.

A couple weeks later, Katelyn's test results came back positive. I got the email when I was in Bible study. I was so shaken I had to leave the room. She had no traditional symptoms, and has always been average size. I was shocked.

We visited TCH again, and this time saw Dr. Ng and Dr. Redel. It's not really any fun to have children that fascinate doctors. Even though siblings have a 30% higher risk of having it, I guess they don't see many sibling groups. Between the two test results and their symptoms, plus Ember"s rapid, positive response to the gluten free diet, we got our diagnoses without endoscopies. However, we will do biopsies at some point, and plan to do genetic testing for all of us. If you're ever in need of a pediatric gastroenterologist, go to TCH. Fishman, Ng, and Redel are all excellent. I felt that Dr. Ng understood our desire for treatment that was as non-envasive as possible (but still effective!).

Dane and I got tested, and we don't have it. Four months later we took Evelyn in for the test, and she doesn't have it. Of course, celiac disease can be "triggered" in people that are genetically inclined toward it, so the three of us will be retested every 3-4 years until we do genetic testing. If Evelyn doesn't carry the gene then she won't be burdened with testing for the rest of her life. The trigger can be anything from an emotional or physical trauma to pregnancy, so we have to keep a close eye on everyone.

Now that I've had a year to pray and learn, I really do feel so blessed. Celiac disease doesn't require painful or costly treatment. It's controlled by diet. I would never have chosen this, but a year into it I can say we will be ok.

Tuesday, April 9, 2013

27 MILLION




Did you know there are more slaves today than ever before?

27 million men, women, and children are enslaved in 161 countries AT THIS VERY MOMENT. 80% are female. 50% are children. They are sold for $90 or less.[1]

I take this very personally. I have three daughters who lead a beautiful life full of love. But even though I think they are very special, there is nothing about them that is more deserving of freedom than 27 million souls in living hell at this very moment. I learn that the average age of trafficking victims is 12 years old[2] and I see Katelyn. I see the statistic that every two minutes a child is prepared for sexual exploitation[2] and I think of Ember. I read that 100,000 American children are exploited through pornography and prostitution every year[3] and I hold Evelyn a little closer. This is happening NOW, and it is happening HERE.

If you know a child, you should take this personally. If you know a teenage girl, you should take this personally. And to get even more confrontational, if you’ve ever watched pornography, visited a strip club, or paid for sex, you should take this personally – you have most likely supported modern slavery.[3] Indifference is not an option.

HOW TO END IT

Awareness is the #1 tool to eradicate slavery. Use social media. Everyone should know about it, be sickened, and take action. Contact your local and national representatives and make sure they know we will not tolerate this any longer.

RESOURCES




SOURCES:
[1] http://enditmovement.com/ “Facts” section

Sunday, March 31, 2013

"Next year in Jerusalem!"


2012's Passover seder was quiet and just plain sweet. 2013's was a little rowdy and very joyful.   Any excuse to host a crowd in my new house!

This is turning into my favorite tradition. 


The rug was necessary. For corralling purposes. 


A couple of people have asked me why we do a seder every year. We're not Jewish. What's the point? 

I want to redeem our holidays - our holy days - and teach my kids that yes, candy and presents and decorations and special activities are good, even important things...but they're not the point.

Jesus is the point.

We celebrate Passover because Jesus celebrated Passover. In fact, the famous "last supper" of Christ before He was betrayed was a seder. The prophesies and symbolism woven throughout a traditional seder were made real by Jesus, our ultimate sacrificial Lamb. 

There would be no Easter without Good Friday. No resurrection without the crucifixion. I want to remember the betrayal, torture, and murder of Jesus - on my behalf - that makes His resurrection and eternal love so sweet. 


Our Passover celebrated being adopted into God's family and, I hope, showed our kids how amazing that gift is.


She's a natural. It was slightly disturbing. (At least it was grape juice.)



The kids were really focused. I was impressed.





Just as the middle piece of the bread of affliction is broken, Jesus, too, was afflicted and broken. One half of this matzah is called the afikomen - “that which comes after” -  the dessert. We wrap it in a white cloth just as Jesus’ body was wrapped for burial.




Just as I have hidden the afikomen, so Jesus was placed in a cave, hidden for a time.  And just as the afikomen will return later on to complete our Passover seder, so Jesus rose from the dead to appear unto many.



Katelyn found the afikomen after a lively post-lunch hunt.


Give thanks to the Lord, for He is good.
His love endures forever. 

I'm so thankful for that. 


Next year in Jerusalem!



Here are some links if you're interested in celebrating Passover next year:

This is a great starting place. Our seder is partially based on her free printable.

Messianic Haggadah: A Passover Seder by Jackson H. Snyder II
A more traditional seder, from which we also borrowed. 

Not technically kosher. Which is ok for my family, because we're not technically Jewish.

I only put what we needed for the seder through the food processor. The rest we ate as a side dish at lunch. This stuff is delicious. 

My platter is from Dayspring's discontinued "I Am" line.


xo, Melissa

Saturday, October 27, 2012

A New Song

Evelyn: "beautiful bird"


{image of 9 day old Evelyn by Emily Crump Photography}

I realized I never posted about Evelyn - her birth story, anything. Typical third child treatment, as I've come to realize.

But seriously...this sweet child has changed our family in ways I didn't know a baby could. She's the perfect combination of cuddly and daring.

And my pregnancy carrying her changed me too. It's taken me 8 months to figure it out enough to tell the story.

{Disclaimer: While this isn't a very graphic birth story, it's still a birth story. Read at your own discretion.}








Even though I have longer than average pregnancies - Katelyn was born at 41 weeks and 4 days, and Ember arrived at 41 weeks exactly - nothing could have prepared me for Evelyn. She was born at 43 weeks and 1 day (or 42 weeks if you go by my midwife's adjusted estimate). It's a good thing she's cute.

20 weeks:

30 weeks: 
33 weeks:
 39 weeks:
40 weeks:

Birth tub practice run:

My midwife, Natalie, giving me a prenatal checkup at home. 



40 weeks. January 27 came and went as we expected. I had Psalm 27:14 on my heart as we watched and waited.

Wait on the LORD; be of good courage, and He shall strengthen your heart; wait, I say, on the LORD! 
Dane started paternity leave that week, so he could help with the kids and be an emotional support to me during chiropractic visits, midwife appointments, and long (gentle) walks. I was ready to meet my baby, but honestly, I wasn't climbing the walls or anything.

41 weeks:


As we hit 41 weeks, I was beginning to get a little stressed. Well-meaning acquaintances at church or on Facebook sort of bombarded me over the weekend, and I was getting induction suggestions right and left. I started avoiding everyone but a couple of close friends. I was visiting my midwife every other day or so, and she finally checked to see what the heck my cervix was doing (nothing). After pouring over my chart, she saw that Evelyn measured small on my first ultrasound. That, and a couple other pieces of information gleaned from my chart, allowed her to scoot my due date back 8 days.

42 weeks:


42 weeks. (I'm sticking to the original dating for clarity. Also, it makes it more dramatic.) I was officially worried. I had been induced twice already in my two hospital births, and avoiding another induction was one reason I wanted a midwife attended homebirth. In between chiropractic adjustments and midwife appointments, I mostly stayed home in our cocoon of an apartment and cooked and cleaned. I snuck in the back entrance of church and left early to avoid the questions. I had Dane screen my calls and texts. I knew I was a walking timebomb...I didn't need the reminders! By the end of the week, I was an emotional mess. That Thursday afternoon, we drove across town to see my midwife. After another painful membrane sweep/cervix stretch, we sat down on her couch to talk. She had to call the physician that partners with the birth center, to have him take a look at my case and make the call about a hospital induction - the one thing I desperately wanted to avoid. We decided as a last-ditch effort to see another chiropractor (the third I'd see this pregnancy) who does a special labor-inducing adjustment. We made an appointment for the next morning.

43 weeks (aka the most pregnant I've ever been. aka the most pregnant anyone has ever been...) and about to leave for the chiropractor to be "induced":




Friday. 43 weeks. We dropped the kids off at my best friend's house and met my midwife at the chiropractor's house. She needed to monitor Evelyn and any contractions I would have during the two hour-long process. Since it can be intense, the adjustment is broken up into four 15-minute sections with a 15-minute break in between. Another patient from the birth center was there at the same time, so we rotated turns on the table with strolling around the block. Of course, that only lasted about 30 minutes, because she literally went into labor after the first adjustment. Yep, there she was, leaning on her husband, contracting, swaying and moaning, and I was...jealous. In her defense,I found out later that she felt really bad for me and she and her husband prayed for me to go into labor. So I forgive her now. Anyway, they left to go to the birth center, and I finished up the adjustment. I think I had some light cramping, but that was an everyday experience at that point.

Back at the birth center (if you're still with me, I promise I am getting to the labor part of this birth story soon...I just don't want to forget this precious, crazy time leading up to it), Dane, my midwife, and I circled up and prayed together. She called the OB and left a message, and sent us to lunch. We went to TGI Fridays, Dane's favorite (I'm wondering now why he got to pick...?) and went to the mall to walk and talk. As we were exiting the mall through Bass Pro Shop, I had a contraction. Like a real, stop and lean on Dane, breathe through it, OWOWOW contraction. Afterwards, I was so happy I was giddy. I might actually get to have my homebirth!

It had been cloudy all day, and on our way back to the birth center for the third time that day, it started to rain. We crashed on one of the beds and Dane napped while I used the breast pump for a while, to try to keep the contractions going. They slowly faded away, along with my confidence about going into labor that day. The good news was that the OB was out of town until Monday morning, and since Evelyn was perfectly fine according to the ultrasound a couple of days earlier, he was ok with me waiting until Monday to be induced. We picked up the kids and went home. I went to bed early, hoping to be woken up by labor...

43 weeks 1 day. Her birthday. ...And...I was! After going through a few contractions in bed, I decided that was a terrible idea and went out to the den to rock on the yoga ball. After things died down AGAIN, I went back to bed. Around 4am, I was awakened by the real thing. I was officially in labor. It was still pouring rain, so Dane went ahead and called Natalie, who decided to come over with another midwife to assist. By the time they arrived, my best friend was there. I was laboring in the bathroom, leaning over the counter in the dark. I remember one of the first things Natalie did was flash a huge grin and tell me, "I told you you're not broken." (A common rant of mine.)

This is where time and details get fuzzy. I know Dane filled the birth tub soon after everyone arrived, because I was in it before the kids woke up around 8. Dane joked that we'd discovered the way to make them sleep in: "make a whole bunch of noise." After they woke up, my mom and mother-in-law came over to help with them, and my friend Samantha (8 months pregnant and planning her own first homebirth) arrived to observe and take photos. They watched the Babies documentary in the den while I labored in the tub in the dining room.



The next few hours are a blur. I really did NOT like the contractions. It was hard to find a good position to labor in, and I was fighting them. Honestly, looking back, they kind of didn't feel right. And mentally I wasn't in a great place either. I didn't really believe I was having a baby that day. Looking back, I think my attitude is the biggest thing I would change.

Transition was quick, just like with Ember. I had two contractions on top of each other, and I thrashed and yelled through them. Then I threw up. Then everyone was all smiles and joyous because it was getting closer except me because HELLO! Transition!

The contractions slowed down to the point that I fell asleep between two of them, sitting up in the tub. I think that may be when a red light went off for Natalie. She sent my kids, mom, and mother-in-law away and had me move to the bed. We started an IV for fluids (I was disappointed I wasn't going to get through this with no needles - another goal) and Natalie checked me. I still wasn't dilated enough!! What happened next is all jumbled up in my head, but it turned out Evelyn was sideways in the birth canal, which was slowing my contractions and keeping me from dilating completely. (I KNEW those contractions felt weird!) So Natalie manually dilated me the rest of the way. That sounds way less painful than it was. It was excruciating. I'm kinda surprised I didn't kick her. I begged and pleaded for her to stop. I had super strong contractions the whole time. I think this was when someone asked if I wanted to move back into the tub for a water birth. If it had been possible to get there without walking, I might have said yes, but at that point I wasn't moving until that baby was out of me. After she was done, I had a contraction, my water broke, and I got the urge to push all at the same time. Evelyn spun around and faced the right way. Good girl!

Here's the last part. I was exhausted, emotionally spent, and worried about Evelyn. Getting through the last few minutes of that labor was so difficult. I know I yelled more than my first two deliveries combined. I nearly gave up during pushing - something that never even occurred to me during my first two. I felt out of control, which is normal for labor, but my bad attitude made that a bad thing. Anyway, I pushed miserably and desperately for five minutes, and my beautiful, perfect, very late daughter was born.

Natalie caught her and passed her under my belly for me to hold her, but on the way, my 5-seconds-old kid grabbed my darn IV and wouldn't let go. Everyone was telling me to pick her up, but since I had just given birth, I couldn't articulate that I literally couldn't pick her up. Someone gently pried her fist away and...I...held...her. All the pain, the emotions, the waiting...it all hit me at once and then was washed away with pure Birth High. AKA the greatest feeling ever.



Looking back on that experience still brings back raw emotions, both good and bad. That's why I've put off typing out this story. It's like I still don't know exactly how I feel about it. If we ever have another baby (I hope we do) I will 100% do another homebirth with Natalie. The level of care - medical and emotional - was even better than I had hope for. Her professionalism, talent, and passion completely erased any concerns Dane had about homebirth. So that's not what the issue was...or is. I hope that when I get to do it again, I'll be able to lean more into the Lord during labor and delivery. I think I may have felt out of control because I was trying to be in control. And obviously, childbirth was out of my hands. It has taken me this long to even start to understand that.

So all this to say: Evelyn. My darling, chubby, cheerful, milestone-busting baby. I am so glad she's ours.


{Me and 9 day old Evelyn again. Image by Emily Crump Photography}

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Saturday, April 7, 2012

Four And Then Five

My Katelyn turned "four and then five" last week.

I think Dane said, "I can't believe we have a four year old" three times today. He's right...I'm not sure how this happened.


A Feast

A family seder...




You give us this feast of unleavened bread, the season of our freedom, in commemoration of the Jewish Liberation from Egypt and of universal liberation from sin and its punishment. Blessings to our God who saw fit to deliver us! Ann Voskamp, A Christian Passover Meal


Glasses of grape juice to bring to life lessons of life and death, love and betrayal, sin and redemption...




Praying for my daughters’ husbands as mine washes my feet...that God would give them a man with a servant-heart...




Washing my girls’ feet...thinking that this is what Motherhood is all about. How it humbles me, while exalting the lowest tasks. Remembering the endless diapers, meals, awake-all-nights and how they’ve refined me...




Delighting in Ember’s eyes that light up as Daddy pours the water and wraps the towel...





...and in Evelyn’s confusion when her big sisters enthusiastically dunk her feet in the warm water.




"On all other nights, we do not dip our herbs even once. On this night, why do we dip them twice?" 
"We dip the herbs in salt water to remember the salty tears our father wept in their bondage, and to remember the cost of our new and eternal life...we dip the herbs in charoset because we have hope."



Attempting lamb for the first time...




Finding the afikoman.




It was then that Jesus added the words, “This is my body given for you; do this in remembrance of Me.” Let us now eat the matzah of heaven, meditating on the broken body of the Lamb of God, who takes away the sin of the world. Let us allow the taste to linger in our mouths.

Jesus lifted the cup, saying, “This cup is the new covenant in my blood, poured out for you.´Just as the blood of the lamb brought salvation in Egypt, so Jesus’ atoning blood can bring salvation to all who believe.  



Next year in Jerusalem!