Dancing Queen

This morning was Rauly's Dance Rehearsal (her performance is this evening). This being our first year in the midst of dance culture, neither of us knew what to expect...so we held hands as we walked up to the big building with bright lights and bling/glitter galore. We searched for the cluster of matching costumes and set about getting make-up, hair and shoes ready. And while she giggled and warmed-up with her adorable girlfriends, I stared. I was literally choked-up all morning long just looking at my beautiful girl! Where have the years gone?...when did she develop in to this lovely young lady? I struggled with guilt this morning as it hit me like a freight train that I am NOT making enough time for Rauly-girl -something I plan to correct.

Anywhoo, eventually I was ushered in to the auditorium to watch all of the groups of girls rehearse. And let me tell ya', you know you're hormonal when every single dance routine filled with girls you don't even know makes you cry - thank heavens it was pitch black so nobody could see me drying my eyes! I had to keep reminding myself after each performance that this is NOT a soccer game or swim meet...you do NOT whistle or shout after a ballerina bows...you clap politely. Did I mention we're new to the dance scene? ;-)


Stephanie and Rauly

Makenna, Hayden, Stephanie and Rauly - friends since preschool

Practicing a bow :-)

Rauly and Makenna are church buddies and now, dance buddies. :-) Sweet girls!

That right there...my heart. Love her dearly and am so proud of her!

Mystery solved?

Moms and Dads, you do realize you are your child's best advocate, right?

We got our first round of answers yesterday and I've been in a bit of a funk ever since...it's good to have answers, but some answers are hard to swallow. We have an appointment scheduled to see a Geneticist at Nemours on May 30'th - this appt was scheduled about 6 months ago and we were unable to push it up.

**A side note, I requested our GI doctor move this appt up, as I felt in my spirit that THIS was where we'd get answers...but he assured me that Lillie had "CVS" and that he had only scheduled this appt as a precaution...that he did NOT believe AT ALL that she had any genetic predisposition towards anything. In an effort to not be "that mom"...ya know, the one who is annoying and pushy and claims she knows more than her doctor, I said ok and dropped the issue.**

Hmmm...nope, sorry, not done ranting. Do you all know that "CVS" is a diagnosis they give you when they've exhausted all other tests and basically have NO STINKIN' CLUE what is wrong with you?? Seeing as how genetic testing had not taken place, I feel as if it was irresponsible NOT to push up this genetic testing and completely inaccurate to diagnose Lillie with "CVS" when our doctor had no way of knowing that without pursuing genetic testing. Grrrrr. (Insert a short scream from me...slightly better now...) Ok...I'm done.

....grrrr....no, I'm not done. This same doctor (who I honestly think is a good man and is doing his best with the knowledge he has) told me that it would do Lillie no. good. to change her diet. I asked him multiple times at multiple appointments if he could offer any nutritional/dietary advice, to which he had none. The ONLY reason we took grain out of her diet, was because of an inner nudging (thank you God) and hours of research that pointed to grain-free diets assisting in intestinal healing. I would've done this 2 years ago had I been told by ANY medical professional that it would help us. Again...you. are. your. child's. best. advocate.

Needless to say, Chad and I didn't want to wait for May 30th and moved forward with Enterolab in Dallas,Tx to find out for ourselves if she carried genes for Celiac and Gluten Senstivity.
**************************************************************************************************************************
Date: 5/24/2012

Name: Eason, Lillie
DOB: 8/31/2009

Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

For more information about result interpretation, please see http://www.enterolab.com/StaticPages/FaqResult.aspx

Stool analysis performed and/or supervised by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: American Red Cross
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab
*******************************************************************************************************************

We received her results yesterday (see above in italics). Lo and behold, she carries genes for Celiac AND Gluten Sensitivity. Am I allowed to say "told ya so"? From what I understand, this means Chad or I (or both) carry these genes and we passed them down to her. We've been encouraged at this point to test both Shepherd and Rauly as it is very possible that one or both of them carry the genes as well.

Does it make me a bad parent or person that after the kids got in bed, I asked Chad to go to Five Guys and order a hamburger with a big side of cajun fries?? We locked our bedroom door, poured ourselves a glass of wine, enjoyed our first "fast food meal" in 6 weeks while we discussed the results and quietly mourned our love of gluten! Seriously, this is going to be DANG HARD to give up!!!!!!!!! Holy guacomole...I love bread. Really. It's pathetic. wimper wimper and big ol' sigh. Ok. Getting back on track....


It is possible to carry the gene but not have any problems...basically carrying the genes means you are "pre-disposed" to develop Celiac or Gluten Sensitivity. However, if you are currently reactive to gluten, (as we believe Lillie is), than gluten = poison. It is not something you can occasionally eat without very real short-term and long-term consequences. It is not something you outgrow (like a dairy or peanut allergy)...this is something she will carry with her for the rest of her life.


What could happen if she WERE to rebel and decide she wants to eat Chick-Fil-A, Macaroni Grill and Pizza Hut or just plain ol' normal wheat bread on a consistent basis? Infertility, cancer of the intestines, severe anemia, osteoporosis, decline in dental health, diabetes, neurological disorders, not to mention the immediate discomfort of vomiting and diahrea that she's been experiencing these past two years, etc, etc, etc. My point?...Gluten-Free may currently be a "fad diet" but it is NOT a "fad-disease or illness" and she will need to take this very seriously...which means our entire family will need to as well.

So what's the next step? The only way to 100% confirm that she has celiac is to do an Endoscopy - something we will not be doing. Chad and I both feel this is unnecessary at this time. We will however be doing a "gluten/dairy/soy/egg" panel that will test to see if she is currently showing sensitivities to any of those four food groups...I'd be willing to bet a million buckaroos that the gluten will come back positive. Any takers? ;-) We will also be moving forward with further genetic testing on May 30th at Nemours.

Thank you for your prayers these past two years...it seems we've finally solved the mystery. And thank you in advance for the support in the years to come.

These articles are for family (and friends if you'd like to read them) who need more info. :-)

http://glutenfreenetwork.com/faqs/symptoms-treatments/gluten-intolerance-symptoms-how-do-you-know-if-gluten-is-making-you-sick/

http://www.foodrenegade.com/the-rise-of-gluten-intolerance/

We go together, like rama lama lama...

The day went by in a blur...water proof mascara, hair curlers, nail polish, a white dress, photographs, a few winks from the ushers (my soon-to-be-husbands best friends), and a whole bunch of tummy flutters. I held my dads arm in anticipation right before the doors opened. And I walked down that aisle with a smile a mile wide...I truly felt as if the people in that church building had never been happier for anyone. Because I was the lucky one! I had found a man far better than I thought I deserved. Chad Eason. My husband. My protector. My best friend.

Nancy Chandler sang along with the rest of Joyful Noise, Dennis Eason prayed over us, and Jim Woodell presented us to the audience while the choir sang "...come in to his presence singing Alleluia...". It was perfect. We walked down the aisle and might as well have floated off in to the sky in a cherry red convertible like Sandy and Danny in Grease...everyone waved goodbye as my heart soared high to the sky. :-) It was a day I will forever hold in my heart.

Well, the story didn't end that day. :-) 10 years of life happenings have gone by...wow! Chad has been an incredible testament to the power of the fruits of the spirit. He's made me laugh and feel joy when I was ready to spit nails...he's spoken words of peace over me in times of very real anxiousness and emotional pain. He's been forgiving and patient, kind and good. He's taught me that men can be faithful. Chad has been a tangible life long lesson in how much God loves me. And I like to think that God thought Chad needed me too. ;-)

Happy 10th Anniversary to my breakfast makin', football coachin', joke tellin', mess makin' ;-p, totally awesome husband - I love you!

We go together like
rama lama lama
ke ding a de dinga a dong
remembered for ever like
shoo bop shoo wadda wadda yipitty boom de boom


Chang chang chang-it-ty chang
shoo-bop
That's the way it should be
Wha oooh yeah!

[All]
We're one of a kind
Like dip di-dip di-dip
Doo-bop a doo-bee doo
Our names are signed
Boog-e-dy boog-e-dy boog-e-dy
boog-e-dy
Shoo-by doo-wop she-bop
Chang chang chang-it-ty chang
shoo-bop

We'll always be like one
Wa-wa-wa-waaa!

When we go out at night
And stars are shinin' bright
Up in the skies above
Or at the high school dance
Where you can find romance
Maybe it might be lo-oh oh oh-oh oh-ove

Ra-ma la-ma la-ma ka ding a da ding de dong
Shoo-bop sha wad-da wad-da yipp-it-y boom de boom
Chang chang chang-it-ty chang shoo-bop
Dip da-dip da-dip doo-wop da doo-bee doo
Boog-e-dy boog-e-dy boog-e-dy boog-ed-y
Shoo-by doo-wop she-bop
Sha-na-na-na-na-na-na-na yip-pit-y boom de boom
Ra-ma la-ma la-ma ka ding-a de ding de dong
Shoo-bop sha wad-da wad-da yipp-it-y boom de boom
Chang chang chang-it-ty chang shoo-bop
Dip da-dip da-dip doo-wop da doo-bee doo
Boog-e-dy boog-e-dy boog-e-dy boog-e-dy
shoo-by doo-wop she-bop
Sha-na-na-na-na-na-na-na yip-pit-ty boom de boom


A wop ba-ba lu-mop


A wop bam boom

We're for each other like
A wop ba-ba lu-mop and wop bam boom
Just like my brother is
Sha na na na na na yip-pit-y dip de boom
Chang chang chang-it-ty chang shoo-bop
We'll always be together
Wha oooh yeah!
We'll always, be together
We'll always be together
We'll always be together [End here or fade out]
A wop ba-ba lu-mop a wop bam boom!

Ac-Cent-Tchu-Ate The Positive!

We've been nearly 100% gluten free, dairy free and sugar free, (LA can add Grain free to that too), for almost 4 weeks now. Am I allowed to toot my family's horn for actually making it this far? Toot-toot! :-)

And look at this beautiful girl....

...she's practically beaming with health! She's not perfect...she's had a few gagging bouts and a few bad diapers over the past month. But, TONS better and we're incredibly encouraged and hopeful.

This month has been a learning experience. I've learned that one could probably have a stroke when checking out at Whole Foods...the food ain't cheap! I've learned that I actually can cook...even though it doesn't come easy. I've also learned that I may have the most supportive and encouraging husband in the world - he has stuck with the plan and hasn't complained at all nor has he flipped out when he's seen the weekly receipts for our groceries. What a good man!

We're currently in the process of genetic testing. We sent tests off on Monday to check for Celiac and Gluten Sensitivity genes. And later this month we will be testing for more (I have no clue what the Geneticists at Nemours will be looking for). I don't know (yet) if the diet is the solution to all these problems, but after countless hours of research this month, we're confident that regardless of whether it's the solution or not, it's certainly helping which means we'll be sticking with it indefinitely (much to Rauly and Shep's dismay!). ;-)

Funny story: This Sunday at church, Rauly handed Linda (my MIL) a note that said "Wen will we be dun with this diyet?". My poor deprived kids. ;-p We've all gone through withdrawals...cranky and irritable pretty much summed up our family for the first two weeks. But the withdrawals have passed and we're all beginning to enjoy Goat cheese, Pumpkin seeds and gluten free bread. There are some things on this "diet" that have been VERY easy to adjust to...like grass fed meat (YUM!) and organic vegetables and fruit (yes, they actually DO taste much better than non-organic). So, it may seem as if we're deprived, but honestly, we're eating pretty darn well....macadamia nuts, luscious strawberries and rack of lamb...yeah, don't feel sorry for us. :-)

Spring Break Camp with Pap and Gigi!

Did I mention my sweeeeeet momma who flew all the way to Florida and took off work for an entire week to come take care of our kids (so we could go to Jamaica), wound up falling and breaking her elbow on her FIRST day here? Did I mention it was due to Lillie Anna's CVS?? The first night my mom was here, Lillie began vomiting...and vomiting...and vomiting. She puked all. night. long. and I went through every single towel in our house! The next morning, she threw up again and I had to bathe her - but this time, I had no towels to dry her off with. So, she pitter-pattered across the bathroom floor with wet feet. I closed the door behind us and completely forgot about the wet tile, but about 15 minutes later, my mom found it. She slipped, broke her elbow and we wound up having to fly in Pap to save the day! (I realize I'm making it sound as if she broke her elbow and that was the end of it. Truth is we spent the day at the hospital with her in agonizing pain while LA gagged and had diahrea...and I think I gained about 10 gray hairs that day!)

Mike enjoying peace and quiet at the Library.

Thankfully Mike (my step-dad) was more then willing to fly in to sunny Florida to help us. Bless his heart. It is inCREDibly hard to believe this is the same man who was diagnosed with Stage 4 Bone Cancer last year!!! I mean, truly...it's a miracle! With a lot of prayer and a lot of diet changes, he has regained his strength, grown back his hair, regained his energy, and grown his faith. He's a walking testimony to God's faithfulness! And I think the week of Spring Break, he may have earned a few jewels for Heaven. ;-) He wound up having to change LA's awful diapers all week, clean the house, entertain all three kids, get them ready for church, make 3 meals and multiple snacks a day, give baths...etc...etc...etc. He is a TROOPER and Chad and I are so thankful for his willingness to drop everything and come to our aid! He went above and beyond by really getting on the kids level - they thoroughly enjoyed spending time with him and my mom and I know many great memories were made.

The girls utilizing my moms IPad.

Mike on "Kitchen Duty".

Rauly cleaning out her drawers because...and I quote..."she couldn't take it anymore". A girl after my own heart - love it!

I'm really not sure how one with a broken elbows helps a 6 year old bake muffins, or tickles squirmy two year olds, but somehow, my mom did just that - and I have pics to prove it! ;-)

Here's LA after a "tickle attack" from Gigi. :-)

Thanks Pap and Gigi for the special week you gave the kids...me thinks a "Camp with Pap and Gigi" should be an annual tradition!...any takers?? yes?? ;-)

Life with Cyclical Vomiting Syndrome

This post is a little graphic, so if you have a weak stomach, you may want to stop reading.
Hard to believe baby girl just came off of a cycle, huh? Other then her eyes being sensitive to light (thus the sunglasses in the above pic) and a few bad diapers today, she's feeling great. It could've been the Easter Candy that brought this cycle on?...or maybe the recent trip to the beach? Regardless, it's done now and we're thankful.

I rarely talk about CVS even with my friends and family because talking about it doesn't change anything. Having said that, there are days when I need to vent, and depending on who bumps in to me first, that person will be the lucky recipient of my emotional over-flow. ;-) Most days though, I understand that unless you've seen LA throwing-up in to her dinner bowl repeatedly, or seen her wake up in the middle of the night covered in vomit as we have...oh...50+ times?, or wiped her bloody bottom - something I have to do multiple days a month,, than there's no way for you to understand what we're dealing with. So usually, unless someone asks me how we're doing and unless LA is in the thick of a cycle at that time, I'll just move along as if CVS doesn't affect our lives. Truth is though, it affects us very much.

I honestly can't remember the last time LA had a normal bowel movement. Diahrea is her norm. We know she's in a cycle when it literally won't stay in her diaper...usually it's containable. I can't tell you how many friends have gasped when they saw her diapers and initially I wonder why they're upset??...then I remember...oh yeah, most kids diapers don't look like this. Something you need to understand, is that she's on the VERGE of a cycle all. the. time. Her body is so ready to start having horrible diahrea and vomiting, that I feel like I'm walking a daily tight rope of keeping her well!!! The only reason LA isn't very ill or hospitalized frequently is due to the fact that we've figured out what triggers her violent cycles and have learned to stop them before they wreak havoc. What could trigger a cycle?...a simple 30 minute trip to the airport. A simple 30 minute trip to the beach. Staying at the Chick-Fil-A playground too long and her missing a nap. Being around strangers. Changing her diet. Too much sugar. Too many carbs. Being too excited or too upset. Honestly, we're still learning what triggers her cycles as she's only two and has SO MUCH yet to experience!

When we were initially given Lillie Anna's diagnosis of Cyclical Vomiting Syndrome (CVS), we were so relieved. Just to know what was causing this...to know it wasn't infectious or viral...to know we could do something to hopefully keep the cycles at bay...well, relief is really the best word to express what we felt! And over the past year, we've learned how to have a functional life with a child with CVS by doing our best to avoid her triggers.

But we're also learning that we can't cut everything out that triggers her cycles. Try as I might, there are a few days a month when she doesn't get a nap. There are days when our family wants to go to the beach. There are times when I have to drive to the airport and she has to come too. And on those days...I hold my breath and pray that this time her body will react differently...unfortunately, that hasn't happened yet. Relentless nausea..relentless vomiting/gagging...relentless diahrea...it refuses sleep or rest or food or water until it is DONE.

CVS is like nothing I've ever seen...it's not merciful in the sense that it keeps. coming. back. And it's not well known so treating it is next to impossible...I feel like each time we try something, we're totally stepping out on a limb and taking a leap of faith (like when our Pediatric GI doctor recommended we put her on blood pressure meds, but admitted that he'd only had one other child as severe as LA and that she'd only be the SECOND patient he's tried this with...grrrreat.) There have been many moments when Chad and I have felt as if we're out alone on some weird island with our little girl and I think to some small extent, it's jaded us. There's nothing like watching your little girl panic because she can't BREATHE in between dry heaving when her little stomach won't stop trying to empty itself...seeing that repeatedly for two years will soften your heart and harden it at the same time. :-/

Chad and I are requesting prayers. We don't want to grasp at straws, but also don't want to ignore anything that could possible relieve her of this syndrome! We have two appointments coming up. On April 18th we're seeing a Pediatric Opthamologist...they're going to look at her Optic Nerve to make sure it's functioning properly. With her sensitivity to light, we just want to rule out that nothing is going on there that could possibly be causing these cycles. And in May, we are scheduled to see a Geneticists. Please pray that we gain new insight from these appointments.

I'm seriously considering trying a new diet with her that will be HARD. It's a "Simple Carb Diet" that we've heard from other CVS'ers can work wonders on this syndrome. Unfortunately, it involves NO grains whatsoever, NO sugar and NO processed food - Lord have mercy. Her triggers seem to be stress related, NOT food related...but who knows? I know it would be doable and if it truly helped her, we would stick with it, but it would be challenging to say the least.

We realize we're one of the "lucky ones"...so many people with CVS are not diagnosed until they're adults. We're incredibly blessed to have found a Peds GI doc who is very familiar with this syndrome. We're also lucky that we can mostly avoid LA's triggers - many people with CVS are unable to figure out what causes their cycles and are in a relentless endless miserable cycle day-in-day-out. Thank you God for giving us answers and direction thus far - please friends, pray that He will continue showing us what to do next!

Hoppity-hop-hop!

Wow!! I can't believe it's already April 8th! This year is already flying by...

Well, yesterday was spent preparing for today. Chad took Shepherd to UF (University of Florida) with some friends and so Rauly, Lillie Anna and I stayed home to cook and prepare for Easter Sunday. I wish I could say that cooking with my girls was something I cherished, but honestly, I don't like it. I don't like it at all. But, I don't want to give my girls a complex, so I work really hard to keep a smile on my face, a pleasant tone of voice and to encourage them to not worry while they turn my kitchen upside down. Things like letting Rauly crack eggs in to the cupcake mix makes me inwardly cringe...and letting Lillie sprinkle cheese all over the Potatoes Au Grautin is fine until she starts sprinkling the cheese all over my freshly mopped tile floor. I'm a bit of a control freak and germaphobe. On top of that, I'm not a good cook...so to get a casserole to actually taste good requires a lot of focus on my part - something a 6 year old and 2 year old don't help with! lol!

Regardless, my team of chefs made a beautiful platter of Bunny Cupcakes, a delicious Pioneer Woman casserole and a yummy Strawberry Spinach Salad. I was proud of them...and proud of me for not allowing my controlling nature to keep us from making sweet memories. :-)

And if I'm admitting to not liking cooking with kids, I might as well go all the way and confess that I really really don't like decorating Easter eggs. It's not fun. It's not pretty. It's way too messy. And did I mention it isn't fun?! I have happy memories of doing this as a child though and am determined to let my kids have this tradition...they have no clue how much I detest this annual project and I intend to keep it that way. Although secretly I'm looking forward to the day when plastic eggs will suffice!

Sleeping in till 7:15am on Easter Sunday??!?!?! Really?!?! (sigh) I guess that's a sign that the older two kids are getting older and not quite as excited about their baskets...kinda sad, but I have to admit, the sleeping in part was pretty wonderful! :-) After tearing in to their gifts, we let them OD on sugar before getting them dressed for church and sending them off to Sunday school...I'm sure their teachers really appreciated us. ;-)

After church services at Argyle, we headed over to the Easons house for a wonderful feast and fellowship. It was a great afternoon filled with Water Balloon fights, Hot Potato, Basketball, a Bike ride and an Easter Egg Hunt. Thanks Dennis and Linda for having us over and for continuing the Easter Tradition at your home!

Shep going in to a sugar-induced coma!!!

Ready--Set--Go!!!!!

I asked Chad to take some pictures...this was the only one he got. Funny...every time I hand him the camera, this is the view/angle he takes. ;-p

My three sweet chickadees...Happy Easter everyone!