Sunday, May 31, 2015

Texas or Bust: Utah Layover

I had printed off a couple of pages from the "Roadtrip Activity Binders" post on the Our Best Bites web site to add to the ones I already had in preparation for our move. One of them was the "Postcard Passport" page.

Buy a postcard every time we stop
for gas and tape it here so you
can remember where we’ve been!

I thought it would be fun for the kids to get one from each of the seven states we'd be driving through: Oregon, Idaho, Utah, Colorado, Kansas, Oklahoma and Texas.

We left Aloha, Oregon on Friday 6/27/14 at 10:15am. We stopped in the Dalles, OR for lunch around 1:00 at Denny's even though we hadn't traveled that long. Our first stop for gas, however, was in Ontario, Oregon, right on the Oregon/Idaho border. Jared knew my goal to have the kids collect postcards along the way, so he made sure to stop at a HUGE gas station oasis. Everyone took their potty breaks in shifts. We all stretched our legs and backsides while I scoured that massive station and gift shop for postcards. Not ONE could be found. I looked three times! Seriously?? What a gip. So disappointing. But whatdaya do? You get back in the car and keep on trucking.

We made a pit stop in Idaho for a potty break before arriving at our friends' house that evening, even though we didn't need gas. That gas station didn't have post cards either. You've got to be kidding me! We were 0 for 2.

On Saturday, June 28, 2014, bright and early, we each had a much appreciated bowl of cereal before quietly vacating Eric and Sara's house in Meridian, Idaho. We strived to "leave no trace" and to make no noise. Once we were on the road it didn't take long for everyone to be out like trout.
Our goal for Saturday was to get to Provo, Utah around noon to meet our sweet friend Elissa McCullough and her man friend for lunch at the BYU Creamery. Plus, we had BYU shirts that we wanted to get from the bookstore before heading south. Despite our best efforts to navigate to the Creamery with GPS, we had some difficulty. Roads were closed and having never stepped foot on any BYU campus before (yes, you read that correctly), we had no idea where we were or which direction we needed to go in. Fortunately, we were headed in the right direction and a quick call to Elissa and Matt confirmed that we were actually just around the corner from the Creamery.

Being at the BYU Creamery during the lunch hour on a Saturday was probably not the smartest idea. It's an "itty bitty living space" but we were fortunate enough to gain possession of a booth for all nine of us. We had to get our food in two different orders due to potty breaks, but we managed. Thank you, Matt, for being the photographer!

After yummy burger and hot dog baskets and ice cream of course, we walked over to the bookstore. I quickly snapped a picture of the suburban when we passed it in the parking lot.

When I was 15 and we moved from Atlanta, Georgia to Anchorage, Alaska, we had a sign posted on our van window that said ALASKA or BUST! Though our trek would not be quite the extreme that that one was, we patterned our move after it in many ways. So Cooper made this sign for us that said: TEXAS or BUST!

The three littles all wanted to hold Elissa's hand while we walked over to the bookstore. And in true Elissa-fashion, she made it work!

It didn't take long though before Calvin ditched that group and made his way over to the BIG boys and made himself right at home with Matt. You're a good sport, Matt Lima--to hold hands with a 6-year-old you don't even know!

I needed to do some exchanges at the Distribution Center before we began our search for some BYU gear. Matt and Elissa graciously offered to take the kids around in different areas to read books and play so we could make the most of our limited time at the store--especially since we'd never been there before. Our friends from Oregon, Wendell and Michelle King, had told us to go downstairs for the kids' stuff. So that's where we went.

I think we made pretty good time between my clothing exchanges and finding shirts for seven people in seven different sizes. Not sure how Matt and Elissa were feeling however, because they were stuck with the Houghlings :) Elissa said they were wearing the kids out for us. Fortunately, campus was pretty empty making it more conducive for the kids to run around and expend energy in the big open section of the building outside the bookstore without it being super disruptive.

While the kids were playing outside waiting for us to finish up, Elissa shared the following that Karcyn wrote:

I love the beautiful summer grass when the wind blows my hair. No really I do but sometimes I always use to go wild every time I get excited all the time. So just tell my "friend" I do not need any help because I work alone! Just leave me alone, okay. Sincerely, Karcyn

Ahh, Karcyn. So thoughtful, yet so random.

We asked Matt to take a picture of us with Elissa before we parted ways. Here's the first attempt with Calvin being Calvin.

The second take was blurry and not pictured. This is the third :) Close enough.

We all enjoyed Matt. He was very patient and helpful to us--and quietly doted on Elissa as a gentleman should. Jake likes him because he's a jazz major and Jake was already starting to plan a jam session with the two of them. If Matt can survive our crazy crew while eating lunch in a public place...on top of playing with and babysitting our kids while Jared and I shopped, then he's definitely a keeper! I told Bev (Elissa's mom) that he passed the Hough-approval test with flying colors! Our time with them was much too short, but we were so gratefully glad we had a chance to be with Elissa (and meet Matt) one last time before we left the western part of the country. (I'm happy to report that 8 days later, Matt proposed to Elissa and she accepted :)

We got gas (which was averaging around $3.94/gal) and then drove back to Lehi to see my college roommate and dear friend, Sarah Christensen, and her family. It was too short too, dang it. Like 20 minutes, tops. But we were face-to-face and I got to see her kiddos and her cute house and got some hugs that will have to hold me over for more than two to three years. 

We arrived at Jared's parents' home around 4pm and promptly brought ALL 7 bags and then some into the house. And man, was it HOT. I think it was only 90 degrees but it felt like 100 easily. After we got settled, Jared and I met his mission friends Elly and Ryan Thomas (both who served in the Dominican Republic) at Chili's for dinner. It was fun to be with them, too and to catch up on their lives.

Jared and I ran to Walmart after dinner in order to replenish our travel snackage and to keep the Sabbath day holy by not making those purchases Sunday evening. Sunday was truly going to be a day of rest for us in more ways than one and we were looking forward to it. Beginning Monday, we had a long week ahead of us.

On Sunday, June 29th, we were thrilled to have Jared's brother's family walk into his parents' house around 8:15 in the morning. I should also add we were UBER impressed. When we were planning the logistics of our move, Jared had mentioned that his brother Kevin (in medical school in Pennsylvania) would be finishing up finals around then and was planning to drive down and visit his parents as well. Wouldn't it be awesome if our paths crossed? Our plans were that we'd be in Utah on Saturday afternoon and Sunday and would leave bright and early Monday morning. In speaking with Kevin, Jared discovered that Kevin had a final exam on Friday and the soonest they could be in Lehi would be...Monday. *long, long sigh* Wow. Sooooo close. Painfully, heartbreaking close. Some time passed and the next time Kevin called Jared, it was to tell him that they were going to leave Pennsylvania right after his final and drive through the night with 6 of their 8 kids to get to Utah by Sunday.

And they did. Not only that, BUT...they were staying at a relative's house on my sister-in-law's side in Park City. When they arrived at Jared's parents' house in Lehi at 8:15 in the morning, every one of them were dressed and ready to go to church--and they had driven in from Park City--and had been on the road from Pennsylvania just hours before that!!! The winner of the 2014 Amazing Hough Relatives award goes to Kevin and Christina Hough. I still cannot believe their sacrifice so we could cross paths for about 12 hours! I'm so glad they made it safely and I hope they felt it was worth it.

After going to my in-laws' ward for church, we came home and got lunch. We have a family tradition of staying in our church clothes until at least after dinner to keep our attitude and behavior appropriate for Sabbath day worship. But on this day, we needed to pack up our church clothes and make sure all the bags and suitcases were ready to load up in the suburban.

This is Jared wearing his new BYU shirt. He said it was "burning his body." :)

We also don't "play" or engage in any other recreational activities on Sunday for the same reason we stay in our church clothes. With that said, however, we were not in our own home. Nor were we on a normal schedule. We were homeless, nomads in fact. And while I could have insisted the kids stay in their clothes and stay inside reading their scriptures or doing quiet Sunday activities, I felt like the better choice would to interact with and enjoy their Hough relatives as much as they could before saying good-bye for who knows how long.

Sitting on the front steps from left to right: Karcyn and her cousins: Ayzlynn, Korbin, and Olivia.

Cooper and Calvin and a neighbor on one of the "baseball" teams. 

Cole, Connor, Jake and another neighbor. (Jared's parents are living in Kevin and Chris' old house so these neighbor kids are happy to see the Kevin Hough kids again, as well.)

 Aunt Chris is a wonderful place to lay your head when it hurts and you're not feeling well.

Calvin in true "What did I do? fashion?

JJ and his cousin Korbin who was born 2 months and 1 day before JJ. Please note, my child is NOT the redhead but the one in the red shirt :)

Cooper posing with our incredible Grandpa Hough.

Daddy trying to help Karcyn's touch of heatstroke go away.

 The two women who married the Hough brothers: Christina and Jenn.

Doc and Jared--silly boys.

 Hough Men: Doc, Jared "Junior", Jared Sr., and Kevin

Jake shooting some hoops with Uncle Kevin.

Jake and his twin cousins Connor and Cole. These are our 1999 babies. Cole and Connor were born on May 21st and Jake came along on December 27th.

Cooper and his cousin Garrett. Cooper is two years older. 

JJ and his "ah ee" (translation: blanket)

Family picture--sort of. JJ managed to jump in mid-air at just the right time in the background.

The Hough brothers and their families, less Kevin's oldest son, James, who is serving a mission in Brazil and their oldest daughter, Emma, who was getting ready for Girls Camp.

Doc, Karole and Jared enjoying a lovely summer's eve on the back patio.

Gathering for a mega family prayer.

Calvin and crazy Uncle Kevin. Those two deserve each other :)

Karcyn and Grandpa Hough

Karcyn and her cousin Olivia.

The three littles.

And a nighty-night to one and all. We had our longest day of driving (10 hours) coming up the following day on Monday, with tent camping the next two nights. Enjoy all the comforts of home! This would the last night sleeping in a bed for a couple days!

Karcyn has Celiac Disease

Last October, seven months ago, I took Karcyn to see our new pediatrician. Karcyn's 3rd grade teacher had suggested to me at her parent/teacher conference a couple weeks prior, that she felt Karcyn might have some underlying issues. She wanted my permission for the school counselor to observe Karcyn to make sure her immaturity was within the "normal" range of immaturity for her age because Karcyn a) has a loud volume, b) gets excited over little things and c) has no filter. None of these things are new to us. In fact, we believe a and c stem from the fact she didn't speak until she was four years old. And while I could have been very indignant about the teacher's suggestion (especially because of item b--I'm sorry, but we teach our children to find joy and gratitude in the little things of life), I tried not to get emotional or defensive. I quickly admitted to myself that this teacher has seen many more 3rd graders in her lifetime than I have (I only had two years with 3rd graders) and not wanting to be labeled as "that kind of parent"--because success comes when we all work together, I agreed to the counselor observing Karcyn. But as I left that meeting, I began to feel completely deflated and a deep sadness that Karcyn was just beginning her year with this teacher--one who had yet to find anything nice to say about her or offer any kind of support to help her be successful--considering our huge move and new everything. I decided that Karcyn needed another advocate outside of our family. I wanted a second opinion on the behavior issues so I reached out to the pediatrician. Which probably wasn't fair since this doctor didn't know us from Adam. But I needed another set of professional eyes.

Dr. Theresa Krause is very cool and hip with the kids. I quietly shared with her the issues the teacher had laid out. I admitted that Karcyn doesn't have a filter and does talk loudly and is on the less mature side of other girls her age (who are, more often than not, the first child in their family), and did these things mean there was something really wrong with her? Dr. Krause began a conversation with Karcyn for a few minutes and then we had Karcyn step out of the room. Dr. Krause said she wasn't getting any immediate red flags about Karcyn's behavior as she was extremely engaging as they conversed together and seemed very bright. Could Karcyn be on the outer edges of something? Maybe, maybe not. But the doctor brought up something new. Dr. Krause's real concern was Karcyn's lack of growth. She said Karcyn is at 1% in height for her age. I told the doctor she's always been petite. Someone has to be on the short end of the chart, right? Dr. Krause said that this is the age (8 and 9 years) when doctors start to notice children who aren't growing or catching up and try to determine the underlying problems that are contributing to that. She said it could be a thyroid issue or hormones or a chromosomal abnormality such as Turner's Syndrome. She suggested we do a blood workup and get a bone growth scan to rule things out.

Shortly after that appointment, I took Karcyn in to the diagnostic center that was attached to the ER around 5pm one afternoon when it was just me and her. I was going to have the ER do her lab work as well, but the tech said the chromosomal study was thousands of dollars and if we did it now, the blood would have to sit and wait overnight (effecting the viability of the sample) because there was no other courier pick-up scheduled and we might want to get the most bang for our buck by doing the blood draw on a morning instead.

Did she say thousands??

After Karcyn got the x-ray, I spent the next two months calling the hospital, the lab, our insurance, human resources, the lab, the diagnostic center, insurance, insurance and insurance. It was a nightmare trying to get CPT codes, billing codes, and wading my way through this new insurance plan in an effort to get a definitive answer to the question: What would our out-of-pocket responsibility be after insurance "pays"? Our insurance coverage in Oregon consisted of an HSA plan and we were on the hook for a $3000 deductible and then 20% after that. We weren't used to having co-pays. I needed to be proactive because this wasn't an immediately life-threatening issue and we didn't feel it was very responsible to get lab work done without knowing if we could afford it or not.

Finally, I got an answer that made sense. And prayed it was true. If we got the labs done at a St. Joseph facility (Jared's employer), we would only pay a $15 copay. Could it really be that easy? I got the name of the gal I spoke with, documented everything and held my breath. We got Karcyn's labs done the beginning of Christmas break when I could take her in the morning without interfering with school.

A week later, Dr. Krause called. She said the bone scan showed Karcyn is a late-bloomer, that she still has room to grow, so that's good. Her thyroid was normal, the chromosomal study was normal, as well as the other panels that were done. However, she tested positive for the Celiac Disease screen. She said that it doesn't mean Karcyn has CD, just that the blood test was picking up proteins in her blood that are evident when one has CD. Only a biopsy of her small intestine could confirm it.

So arrangements were made to see a pediatric gastroenterology specialist. The closest one "in network" is in Austin, TX. But fortunately, he does come to College Station every Thursday (bless you, doctor!) for regular office visits. The first available appointment for a consult with Dr. Easley, however, was February 26th. So we had two months to wait. [During which time I got the lab work bill back. They billed over $3,000 to insurance. Insurance paid some and then we got a $600 bill. I called insurance and after a 45 minute phone conversation, sure enough, someone hadn't noticed the correct tier 1 facility code and our responsibility was indeed only $15].

Dr. Easley is amazing! He's a big silly tease. The kids clearly love him and he's very skilled in talking to parents in a way that's informative and friendly. It was very comfortable and I'd even go as far as to say--fun! He started out by pronouncing Karcyn's name in four, off-the-wall, crazy ways. She was having giggle problems. He finally settled on Kar-Kin. And she shot back and called him Dr. "Easy."

He basically told me that her numbers were SO high that he was super confident she has Celiac Disease. It is possible, but extremely rare, that a child with those kinds of numbers are giving a false positive for Celiac Disease which meant it needed to be verified through an upper endoscopic biopsy (esophagogastroduodenoscopy or EGD) of her small intestine. He drew us pictures and explained that you have small villi that line your small intestine and their job is to absorb nutrients. He showed us how they should look. He explained that when you have Celiac Disease and eat gluten, the proteins in gluten become toxic and cause damage to those small villi reducing them to little nubs. This can be painful, of course, but the damage leads to decreased absorption of essential nutrients and can lead to other subsequent diseases or conditions.

He said she would need to continue to eat gluten because if not, the biopsy would give a false negative. We needed to load her up to make sure he got an accurate picture from the tissue samples he took.

The biopsy was scheduled for Tuesday, March 31st. I just figured I would have to go to Austin with Karcyn alone and I was dreading it. But Jared saved me and took the day off for which I was very grateful. Not just to drive us, but so we could be there together for this very new experience. We were going to take JJ with us, but as the day drew nearer, we got word, that you can't bring other children with you. Blasted. So I needed someone to watch JJ. Amazingly enough, just a few days prior, I was able to secure our college friend, Maren, for the time before he went to preschool and after he got back until the older boys got home to take over. It worked out great because Maren didn't need to be at work until then anyway. Such a tender mercy!

Interestingly enough, we didn't know Karcyn's surgery time until less than 24 hours before! How were we supposed to plan around that?? Fortunately, Maren was flexible. The surgery was scheduled for 12:45 in the afternoon. She had been fasting since midnight and could have water only until 9am. We left at 8:30am to make sure we had enough time to travel, find the surgery center, turn around and backtrack if needed (it was needed) plus be there an hour before, as advised. Getting to Austin was a breeze. So much nicer than driving to Houston. We were there waaaay early, but that was also a blessing. This allowed us to speak with the nutritionist before her surgery instead of during or after, as previously scheduled.

We got a big folder of LOTS of information about what foods are safe, which ones aren't. Very overwhelming! Even though we still weren't 100% sure she had Celiac Disease, I was operating on the assumption she did. My mind was spinning. Stephanie, the nutritionist, was very nice and easy to talk to. I did learn something unexpected. The WHOLE FOODS chain was actually started in Austin, Texas! Having just come from Oregon (where this store and others abound) to central Texas where we're lucky just to have a Sam's Club, I was shocked. And I was really wishing, under the circumstances, that we were back in Oregon for the accessibility to Whole Foods, Trader Joe's and Costco. As we considered the food changes we'd have to make, Jared and I had decided that when we ate as a family (at breakfast and dinner) we would eat gluten-free meals. But at lunch time, when the kids are all in their separate classes/schools we'd allow the boys to have sandwiches or other non-GF foods. Hopefully that would work.

After speaking with Stephanie, we trudged down to the surgery center where I wrote a $920 check (on top of the $270 already paid to the anesthesiology group--with Dr. Easley's bill and the statement from the pathologist yet to come) to get the ball rolling.

Karcyn was one happy camper! If she was afraid, she sure didn't show it.

Fortunately, it didn't take long before they called her back for all the pre-op business. She thought all the machines were cool and fascinating to watch.

Out of her clean jammies and into the hospital issued ones! Karcyn was SO excited to see that her gown had LOONEY TOONS on it! The nurses were impressed she even knew who those characters were!!

After vitals were taken and she had changed, the nurse asked Karcyn what flavor she'd like for her "space mask." She started naming the choices: strawberry, birthday cake--
Karcyn piped up and said, "Birthday cake!" I suggested she might want to hear all the options first before deciding. The nurse listed off four more and Karcyn responded, "Yeah, birthday cake." Okay, so what do I know?

A nurse (there were about five different ones who came to do different things--I couldn't keep track of them all) announced that Dr. Easley would be by in a few minutes to talk to us about the procedure. Karcyn smiled and said, "You mean, Dr. Eeeeaaasy??" The nurse and another one near-by got a kick out of that and felt Dr. Easley had finally met his match :)

Here's a picture with Dad--who had just lost 30 pounds in 7 weeks (doesn't he look AMAZING?!)

Cuddling with a warm blanket and Rex.

Getting ready to go....

Karcyn waved and said, "Good-bye!! See you after the ride" as they wheeled her away!

Jared and I were then escorted to the recovery room where we were to wait for her. We munched on a couple snacks and hadn't been there 20 minutes when Dr. Easley showed up. I had a puzzled look on my face and said something along the lines of "Aren't you supposed to be somewhere?" He said they were all done. Man! That was fast. He said SHE did great. But her tummy was not happy. He showed us colored images that he had taken with the camera when he did the scope.

#1 is the esophagus. #2 is the entrance to the stomach. #3 is the stomach. #4 is another angle of the stomach and the scope. #5 is the duodenum--the entrance to the small intestine. He pointed out what the tissue in the small intestine should look like (similar to #5) and then showed what it actually looked like in numbers 6-9: red and "angry" looking, scalloped along the edges, not smooth. He said this looks like classic Celiac Disease to him. But we should know for certain by Monday, April 6th when the pathology report comes back. I hadn't considered it before, but I asked, "What if it isn't Celiac?" His response, "Then we'll cross that bridge when we get there." He left the photos with us, shook our hands, bid us a nice day and was off. Yikes! It never dawned on me it could be something worse than Celiac Disease.

Karcyn was wheeled in right after that and the nurses quickly fluttered to her side to check her vitals and make sure she was comfortable as she was coming out of her birthday cake "fog."

Once she shook out the cobwebs, Karcyn was offered a popsicle. She said she would like a purple one.

Her best "post-op" smile :)

After munching on the popsicle for a couple minutes she said, "Thank you, Mom, for bringing me." Uh, to get a biopsy? Sure thing, Sweetie. Then, she scrunched up her face as if she was trying to process some information. After a moment, she slowly said,"This popsicle kind of tastes like grape." We chuckled then explained that purple popsicles are grape!

Watching some PBS Kids. Life is good.

After her popsicle, one of the nurses took out her IV and detached her from the wires connected to the monitors. We had her sit up slowly and Jared took this opportunity to show her the pictures that Dr. Easley left with us so she could see her tummy, too.

Once the check out orders were given to us, it was time to go! It took longer to get there and wait around to get started than it did to do the whole procedure. It was also sticker time for Karcyn. Her choices were: Tinker Bell, Hello Kitty, Princess, Cinderella, Doc McStuffins. Karcyn's answer: Ultimate Spiderman. Can you tell this girl has four brothers? The nurse said, "Oh girl, I think he's good looking. I would have picked him, too!" 

Karcyn did so well on her way home. We gave her saltine crackers to munch on and when we stopped to get gas, I grabbed some Salsa Mango Sun Chips to try--one of their experimental flavors. So gross! But Karcyn loved them!

Monday, April 6th, we got word that Karcyn DOES have Celiac Disease and we were to start her new gluten free diet immediately. And then...the real work began. 

Trying to come up with menu ideas for meals is chore enough on a limited budget and with seven mouths to feed. I am so grateful Karcyn's diagnosis was nothing worse and that it can be controlled with diet (for the rest of her life), but maaaan. What a headache this was going to be while we wrapped our brains around it. Furthermore, while we suspected this was what she had, we couldn't DO anything for it until we got the official word. And then it was "okay, GO!" She would need a meal a couple hours after that phone call from the doctor and then three meals the next day and the next. There's no break from it or working up to it. It's a perpetual thing that doesn't stop. Plus she's at school and involved in other activities where food is offered so we'd have to be super vigilant about that and make sure teachers and leaders were informed. 

We need to avoid wheat, rye and barley--and anything else that might have traces of these grains in them! Soy is okay. But not soy sauce because it has gluten in it. Recent studies show that oats are probably okay, but not because they may be contaminated with wheat during milling and processing. So the oats must be certified gluten free.

Our love of cereal has been cut short. Clearly our restrictions are purely financial. The only GF cereal out there, in our budget is Chex. Sam's carried the big boxes of Chex at Christmas, but hasn't since. Of course. I already put in my request to bring them back permanently but I'm not holding my breath. Interestingly enough, Rice Krispies are not GF. They are made with malt, which comes from barley. Honestly, we were only eating Cheerios (Plain or Honey Nut) that we could purchase in bulk at Sam's. So now we're having to adjust to the reduced frequency of cereal since it's not a bi-weekly purchase anymore.

I still don't know my way around my local grocery store (meaning, I do not have the rows and their items memorized yet like I did in Oregon...) and now I have to read ALL the food labels--every last one of them. Even if something is labeled gluten-free, I can't assume it always will be because manufacturers change their labels AND their ingredients all the time. Consequently, I am now a full-time label reader. And the GF info is never in the same place. Sometimes it's on the front and jumps out at you, sometimes it's in super small print at the top or bottom, in a corner, after the ingredient list, or off to the side. 

Yet on the flip side, there are foods that ARE gluten-free but aren't labeled that way! I just found out from a GF blogger that KIX cereal is gluten free, but nowhere does it say that on the box. Sure enough, there are no hidden sources of gluten in the ingredients. It would be so helpful if they were marked it GF so I wouldn't have to spend hours at the store like a detective, scrutinizing every little thing or worse....trying to do this with a 3-year-old. It would at least help me sift through the sea of food products.

Other foods I was surprised to discover that have gluten in them, just to name a few:
*taco seasoning
*canned white beans
*canned chili
*dried mangoes
*chewing gum
*baking powder
*ground spices
*tomato soup
*cream of soups
*salad dressing
*ground meat
*canned meats
*curry powder
*lunch meats
*spaghetti sauce
*alternative milks

A few possible non-food sources of gluten:
*play dough

While Jared was working on his weight loss that began the second week of February, he was eating lean and greens only at dinner. We kind of adopted that as much as we could as a family to support him. Consequently, dinners haven't been hard to maintain as gluten-free. With that said, ironically, our all time favorite family meals are the gluten filled ones. Guess we'll just have to find new favorites. 

Lunches have been the bane of my existence. I'm SO grateful school was out Friday and we can spend the summer planning lunches for Karcyn to take to school that are budget-friendly and have a bit of variety that she'll enjoy. We'll just make a list and create a rotation.

Karcyn has been amazing. She has never ONCE complained about the new diet (just the rest of us have!) and she has stuck to it fiercely. Since we began the transition, she always asks me, about every meal I make or food item I offer her, "Is this gluten-free?" After a couple weeks of this question, several times a day, I was growing weary of her constant inquiry. I began responding, with a hint of exasperation, "Yes, Karcyn, this is gluten-free. Mommy would never give you something that was." 

Until I did. It was a Kolache that I had gotten for the kids after we cleaned the church building last month. I actually remembered she couldn't have any and purchased some GF vanilla donuts for her to eat instead when we got home. But somewhere along the line, our plans changed. Jared was working that day, so it was just me and the kids. We needed haircuts and I think I just decided to combine two trips in one which meant we would end up eating the Kolaches in the car while we waited for stores to open at 9am. I even did the math right and picked up ten  Kolaches (two for each of the boys and me) not twelve which would have included Karcyn. But when it came time to divvy up the yummy pastries, Karcyn got not one, but two! I couldn't figure out why some of us got only one. Then it dawned on me and I exclaimed, "OH NO!!! KARCYN!! That had gluten in it!!" Stupid me. I freaked her out and she started to cry, weeping and a bit fearful, exclaiming, "I'm going to be sick!" Way to go, Jenn! You are Mother of the Year. I finally calmed her down and kicked myself repeatedly for a) forgetting my daughter's gluten allergy and b) upsetting her like that. We had done SO well for three three weeks. I was furious that all our painstaking work was wiped out and we were back to square one! Karcyn continues to ask me if the foods I'm preparing are gluten-free and...well, I'm okay with that!

My second epic fail was last Sunday. Jared was working that day also. I was teaching gospel doctrine, which makes me a little uni-focused--especially without Jared to help out with the kids. As I was finishing my morning prayers, I was reminded to go get Karcyn's Chex piece for the Sacrament since she can't have the bread. Between getting up from my prayers and walking the five steps to my bedroom door, I totally forgot! Didn't remember until we were going into the chapel later that morning. Dang it! I'm sure she'll be reminding me each Sunday from now on. I hope she does, actually!

It's been seven weeks now since we began our gluten-free journey and here are some things we've discovered:

*It's a great blessing that there are a TON of gluten-free foods available on the market today, more so than ten or even five years ago. However, they are still super expensive for very little product. 

*There are a plethora of great gluten-free web sites out there, too, written by people who are living the experience and have done it for years. I'm grateful for their insights, but I have to say, the recipes they post require so many obscure and expensive ingredients that in the end only combine to make something that serves two or four people--the size of their families. This just doesn't work for a family of seven--which calculates to 12-14 servings with our growing boys. Every once in a while I can find a recipe here or there that might work.

*Gluten-free pasta is not worth it. We'd rather skip the pasta altogether. If someone out there has a brand of GF pasta to recommend, we'd love to hear it!

*It's a tender mercy than Karcyn has loved rice for many years. It's her fave. Just last week, however, Jake saw the rice cooker on the counter when he came home from school and asked, "Riiiice? Again??" We don't eat it every day, but he is clearly "riced out." 

*I had more gluten-free recipes in my personal repertoire than I thought and several more that could be with a small adaption.

*I have not lost one pound since going "mostly" gluten free. So not cool.

*You gotta be flexible. We had originally said no gluten for anyone at breakfast or dinner, when we eat together as a family. But as the days wore on, it was clear, just eating eggs, was tough for the kids. Calvin loves his egg sandwiches. Jake loves having "dipped eggs" (over medium) with toast. Jake eats up to half a dozen scrambled eggs at breakfast without blinking an eye and hasn't even started training for cross-country yet. He's gonna need some major calories and gluten-filled foods (like bread) are a good way to get those. Soooo, I threw in the towel and reinstated bread at breakfast for the boys. Concurrently, I purchased a ten-slice loaf of gluten free bread for Karcyn (for $7), where each slice is, at most, about 3/4 the size of a regular slice of bread for her to have for breakfast from time to time. But, not anticipating we'd need GF bread, I never bought her a new, clean toaster (where the GF bread won't get contaminated by the crumbs from the regular bread), so I quickly adapted and toasted it up in the skillet for her. It did the trick!

*Experimenting with meals stinks! Whether it's a new pancake recipe or the Upside Down Pizza I made the other night for dinner (which had over 600 4 or 5 star ratings on, it's a crapshoot! And gross. Plus you have to have a back up plan and having some quick and easy GF meals to fall back on are virtually non-existent to us at this point. But when we're fortunate enough to find a recipe that tastes amazing and is loved by all, it is worth its weight in gold!! 

I've had several people ask what Karcyn's symptoms were or how we discovered this. Honestly, it was because the pediatrician caught it. Looking back though, she is more gassy and crampy (which we attributed to the gas) than any other child, Cooper being the next after her. But the frequency at which those episodes occurred was so low that it never triggered any thoughts that we might have a food allergy, because her stomach pains never seemed to follow a pattern like flaring up after we ate a specific food or dish. And if she's been in frequent pain, Karcyn has literally and figuratively gutted through it like a champ because it certainly wasn't appearing to interfere with her quality of life. 

Some kids, if they get "glutenized" immediately vomit, for example. Or have a definite outward manifestation of their allergy. Karcyn doesn't. So in some ways, it'll be harder for us to know if we're successfully avoiding everything with gluten. Furthermore, Dr. Easley explained at the consult appointment in February, that for some kids, the only symptom of Celiac Disease they have is being short. And once they eliminate the gluten from their diet they shoot up in height. That makes me wonder about Cooper. He is most definitely short. Always has been. And while Jared and I think he's actually grown a smidge recently, we can't help but wonder if he has Celiac Disease too.

Karcyn had her follow-up appointment with Dr. Easley on Thursday, May 28th, and we learned some more things.

He asked if we had been following a strict GF diet for her. I said yes and then Karcyn promptly threw me under the bus and brought up the Kolache incident. Dr. Easley said not to worry, those things happen from time to time, and assured me that one mishap like that does not reset you back to zero. It can cause minor damage, but it doesn't wipe out all the work you've done thus far. So that was good to know.

Secondly, in three months time (and realistically probably just since we went GF seven weeks ago), Karcyn has gained 1.5 pounds and grown 1.5 inches! She is now in the 2nd percentile. Dr. Easley was SO impressed and very encouraged by this dramatic increase in growth. He was going to do a blood screen again to check her numbers but because she's doing so well, he decided to wait until the fall. I jokingly asked him if we earned a gold star for that and he said, "You get more than a gold star, you get a platinum star!" He said we should definitely be proud of our diligence because it's making a difference. He said he has some parents who give their kids with CD one day a month where they can have all the gluten they want. And Dr. Easley's like "Noooo!!!" You just have to make the change and stick with it.

I told him I had heard that if she's got CD then that means either I have it or Jared does (I predict it's Jared and not me) and asked if that was true. He smiled and said he was just getting to that. "Yes, one of you have it and your immediate family needs to be screened for it" through the blood test. I cringed, though, at the possible financial ramifications and asked if everyone would need a biopsy as well. He said, most likely, considering the circumstances, if the lab numbers are really high, we'll just assume that person has it and that they will need to make the complete change to GF as well. He said we can discuss options for those whose lab numbers are borderline if it comes to that. 

I learned that 40% of Americans have the Celiac Disease gene. So first, you have to be a carrier. But then you have to have a number of circumstances or "insults" against the gene that awaken it--which is why it can pop up in anyone at any age. Crazy. Just the past couple weeks, JJ has been complaining of stomach pain. He usually lays down and then a little while later, he's okay. At first I thought he just had the stomach bug. But he didn't. When it continued off and on over the course of a week, I figured his "stomach pain" was something else and he just didn't know how to articulate it. But he continues to say something about his tummy every other day or so. Who knows? Maybe he has it, too. This kid lives on PB and Bread alone. For the purpose of the blood test, the remaining six of us Houghs will need to make sure we're getting enough gluten in our diet every day for the next 3-4 weeks to ensure our lab results are accurate, which, believe it or not, will be trickier than it sounds as we've been working hard the past two months to eliminate as much gluten from all of our diets as possible. Now we have to switch gears again. 

Dr. Easley also mentioned that while you don't need to worry about gluten getting on the skin, you do need to worry about it getting on Karcyn's fingers and then having her eat. So if there's gluten in her shampoo and she washes her hair then has a finger food afterward, that can be a problem. Working with play dough, for example, unless it's gluten-free, Dr. Easley says, she'll need to wear gloves. Yikes! Chapstick is another one to consider as well as chewing gum. More head spinning...

I also asked about vitamins and growth potential. We wondered if Karcyn would need a supplemental vitamin and Dr. Easley said if she's getting a variety of foods (fruits, vegetables, meat, etc) she's fine. But then I asked about brain development when she was a baby--should we be concerned that she didn't get adequate nutrition as an infant? He told me she didn't have Celiac Disease when she was a baby. It's a slow growing disease and she was fine as a baby. 

And as far as growth potential, if Karcyn continues to be gluten free, she will absolutely catch up on the growth that she's missed thus far. If God intended her to be 5 feet, 7 inches, she will grow to be 5 feet, 7 inches. You can't make someone taller than they're supposed to be, obviously. If, however, we don't stick to the diet, we can certainly make her much shorter than she could be.

So that's where we are right now. Hopefully, we'll be even more adjusted with an additional seven weeks under our belts.