THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Monday, December 19, 2011

December 19th: Timeline Reflections.

Three years ago, I was in the kitchen making Christmas cookies.  I was up to my elbows in cookie dough, and flour dusted every surface area around me.  The phone rang in the midst of this madness.


It was the news that my daughter's celiac biopsy was positive.


I remember hanging up, and staring and the floured fingerprints on the phone.


Even though I wasn't shocked, I felt shocked.

Numb.



We've come so far in the three years since we started our gluten-free journey.  At the time I was blogging under a different URL.  That blog has since been made private, but every now and then I like to dig out an old post to share over here.


If you've read Candy Hearts for awhile, you already know that I don't use my children's real names.  I'm making an exception with this post, because I want to leave the posts exactly as I wrote them in this timeline.


And so, without further ado, welcome to the blur that was the start of our gluten-free journey...but be sure to read to the end.


Because, really, everything is okay.



******November 21, 2008******

Lord, thank You for this beautiful day. Thank You for rescuing our family in the midst of crisis and planting us in AZ -- where I can be home to manage Addy, Jason has a secure job during this economic tornado, and our family has access to quality health insurance. Thank You for the abundant blessings You've poured down upon us.

It's been a very difficult week. Managing Adalyne's diabetes has been extremely challenging and we've been left grasping for answers when none can be found. If we ever needed a CGM, now would be the time. I got all the paperwork back from the hospital in today's mail and just faxed it to the CGM company. And we're off...

We got the "high blood sugar call" shortly before 9 am this morning. Not sure what to do, we just decided to pick her up and avoid the redundant school drama that we've been dealing with all week. She was fine. By lunch, she was a perfect 107. Thank You, Jesus!

But there was a different call this morning too. Addy had her yearly labs drawn on Monday. No news is good news -- but we got news today. Addy's celiac screening test was positive. It wasn't a little positive. It was nearly 11 times normal -- it was VERY positive. Now we're on the "urgent wait list" for a GI appt at PCH. She'll need an endoscopy to confirm the diagnosis.

A celiac diagnosis won't surprise me. She's had symptoms for YEARS...but her yearly screening has always come back negative, so I've tried not to dwell on it. Now it looks like I'll have to face it. I cannot tell you what an impact this will have on our already topsy turvey life. This is like finding out she has diabetes all over again.

She'll have to transition to a completely gluten free diet. If we don't abide by the dietary changes, it'll wreak havoc on her diabetes, ruin her small intestine, and leave her with a colostomy. She'll be at high risk for developing GI cancer on top of the myriad of things she's already at risk for due to diabetes.

I didn't expect this today. Now I have to figure out where to go from here...

******December 2, 2008******

I'm making chicken tacos tonight. Actually I made the chicken filling in the crock pot yesterday, but realized that we didn't have any tortillas at the last minute. So we had pancakes last night. Gotta love breakfast for dinner.

This afternoon, I was making cornbread while Addy was working on her homework. After asking what we're having for dinner, she made an ugly face and announced that she doesn't like tacos. In our house, we have a rule...if you don't like what Mom is making for dinner, you get oatmeal. Guess Addy is having oatmeal for dinner. Easy as pie :)

Or is it? Then my mind started wandering...what will I do if her endoscopy does actually show that she has celiac? From what I've read, oatmeal is out...as are the chicken nuggets she had for lunch and the NutriGrain bar she had for breakfast. Same goes for the cookie she had before starting her homework. Sighing heavily, I looked down and realized the cornbread I was making wouldn't work either - I had just poured in a cup of white flour.

No birthday cake. No pizza. No "normal" bread products at all. Certain shampoos and body washes even contain gluten. She'll need her own toaster, set of pans, utensils...cross-contamination can have devastating effects. Will I be making 2 dinners every night? Most of the time I struggle to come up with one. Gluten free food is extremely expensive and we have very little options for places to shop anywhere near us. Looks like we'll be doing alot of mail-order groceries. I applied for a part-time job back at the bedside this morning. We can't let her starve to death.

She saw the GI doc today and now we're waiting for the hospital to call us with her endoscopy appointment. Wait, wait, wait. Hurry up and wait. The doc wasn't warm and fuzzy at all. Very blunt and to the point. No room for emotion -- thank goodness only half my brain was in the room. The other half was trying to keep my 3 little girls from destroying the office. Distraction is a good thing.

How exactly are we going to make life with celiac normal around here -- as if already living with diabetes isn't hard enough??? Oh, my little Addy. You're only 5 years old and have already faced so much.

But, God has a plan. And, if celiac is part of our plan, we'll do whatever we have to do. No doubt celiac will introduce us to many new faces that we wouldn't otherwise meet...faces that might need to hear the Good News of Jesus Christ and it'll be up to us to carry on His message of love, hope, and peace. There is love, hope, and peace today...and, if her endoscopy is positive, there will be love, hope, and peace in that moment and all the moments that follow too. God does not change.

We'll be able to figure it out. I have faith in that. Even still, selfishly, I have to admit that I'm praying for Addy's endoscopy to be negative. And, selfishly, I would ask for all of my blog readers to pray too -- and also to get as many people as possible praying for a negative endoscopy result as well.

I know the picture is bleak: She has Type 1 Diabetes (10% of people with T1D will develop celiac -- that's why they screen for it routinely once a year.), she's had unexplained belly pain and bowel issues since she was 18 months old, and now she has a positive blood test. The odds are against us. But does that mean I should give up hope? Does that mean I shouldn't lay it at the cross and pray for God to spare her from living the rest of her life with celiac too? As her mother, I have to do whatever I can...so I'm pleading with you to find it in your heart to be vigilant in prayer for her. If you're faith is on the fence, find it, and hit your knees.

Addy needs your prayers...and, quite frankly, so do I...

******December 19, 2008******

First of all, I'd like to take a moment to give thanks for the many blessings God has bestowed upon our family. He has always provided for our family's needs and we are extremely grateful for his mercy and grace. We know that God does not change...He has a plan and His love for us does not waiver.

Adalyne has celiac disease. I can't say that I'm surprised. I've known for many years that she has shown symptoms. Every year that passed with a negative celiac test was a relief. But those days are over...her biopsy was positive and now we need to figure out where to go from here.

The implications are huge. I cannot even begin to describe the many, many, many changes that we need to implement around here in order to assure her well being.

I was in the middle of making cookies when the phone rang. Ironically, my kitchen is covered in white flour and cookie dough. Cookies that she'll never be able to eat again...

******December 20, 2008******

Life is too short. So, we got the news...time to enter the GLUTEN FREE (GF)WORLD! But first...

THURSDAY:

Jason took the day off on Thursday for Addy's kindergarten musical. Afterwards, we kept Ava (Kaelyn's BFF) with us and headed to The Good Egg for breakfast. I wouldn't say it was a GF meal, but we hadn't gotten the call yet and were still proceeding as normal. That being said, breakfast was very yummy!!!

After breakfast, I decided to embark on the task of CHRISTMAS COOKIES. I had looked through my cookbook the night before and assembled a list of things I'd need...Jason headed to the grocery store while the girls and I headed home.

I figured that, if this was the last time our family would enjoy traditional Christmas cookies, I'd better get with the program. Sooooo....I started with these cute little stocking shaped sugar cookies filled with chocolate chips and pecans. Here's a picture of what they're were supposed to look like...


Cute, huh? Yeah, well...mine -- not so cute...


If you look at them from the right angle they kind of resemble a "plumbers crack". Yum. They're overly crunchy and, quite frankly, I would rather just toss them out. Jason says he likes them....even though they haven't been touched since I made them -- thanks for trying to make me feel better, Honey :)

My next batch didn't turn out very well either. Cute little wreaths that were supposed to "melt in your mouth". Instead they just seem to dry your mouth out!!! I'm talking DESERT DRY -- 120 degrees dry...you get the point. Jason didn't hold back with the faces and drama to let me know they wouldn't make the cut.

As they say, the THIRD TIME'S A CHARM!!! My mom used to make these things called "Snowballs" every year. They were my absolute FAV growing up. Must admit that my batch came in a close second to hers :)

Thursday evening, we went to look at Christmas lights. We found a really cool house last year...an elderly gentleman puts together this AMAZING display of hand made wood carvings and opens his home for tours. I'm telling you his place is Christmas Headquarters!!! Last year we went while my mom and grandmother were in town....the theme was "Santas". This year, the theme is "Angels".




There's a really funny story about his swimming pool. He raised 4 kids (or was it 6?). Anyway, he kept them in line -- especially during the teen years -- by making them dig the hole for the backyard pool! He said it took a long time...but they managed to stay out of trouble...and he ended up with a nice backyard when they were all grown and gone ;)


FRIDAY:


Well, Friday, I technically made that 3rd batch of cookies I mentioned earlier -- the yummy snowballs. In fact, I was in the middle of making them when the call came in announcing that Addy has celiac disease.
Friday evening, Jason and I went to the Michael W. Smith concert at CCV. This was our first date in quite awhile. Aside from the marriage conference we attended in February, our last date was in November 2007 for our anniversary.

While it was nice to have an evening out, we were both pretty pre-occupied thinking about the new turns life would take now that we have to live with diabetes AND celiac. One of the songs really hit me hard and I couldn't help it when I started crying. Part of me is so sad. I remember grieving over losing our "normal" life when she was diagnosed with diabetes 3 years ago. It feels like we had finally achieved our new "normal" and now everything is about to change again...

SATURDAY:


Well, I guess the call came just in time. We headed downtown with a HUGE church group to deliver food and clothing to the homeless. What better way to rid ourselves of gluten!! We dug through our pantry and cooked up everything we could find in our freezer...chicken nuggets, chicken patties, pancakes, taquitos... They were pleased to have something aside from a PB sandwich!

This is the 4th time our family has participated and, each time, it makes an incredible impression. This time, however, there was something much bigger that uncovered a difficult reality to accept.

There were children. Never before had we encountered children on the streets. Families walking around trying to collect as much as they could carry -- families with children. On the corner, there was a family with 7 kids living in a box. A BOX, PEOPLE!!!! THIS IS THE UNITED STATES OF AMERICA!!!! Our government has bailed out all of these big corporations while families are losing their homes and CHILDREN ARE BEING LEFT TO LIVE ON THE STREETS!!!! I can only imagine how overwhelmed social services must be. It seems that kids are usually intercepted before they get to the street...but, they were everywhere. Little innocent children.

We didn't come prepared to deliver stuff to kids. There wasn't much to offer them. I dug through my purse and came up with 2 diapers and some wipes. When I walked them down to the corner, there was a little 10 month old girl -- in a pink jacket with a pink barrette in her hair -- sitting in A BOX.

And I cried over Addy's celiac diagnosis? Let me tell you...this experience really put things into perspective. I can't get that baby girl's face out of my mind.

After experiencing the sobering reality of children on the streets, we went out to lunch. Addy had a yucky low blood sugar and she needed to get some grub. The Old Spaghetti Factory even had a GF menu :) The girls and I shared our first GF meal. Jason had some too, but there wasn't enough for all 5 of us, so he got his own plate -- of "normal" pasta. Actually, our GF dish was quite tasty. Addy hardly noticed and gobbled it up!

After getting home and letting the girls ride bikes for a bit (Addy is a TWO WHEELING FOOL!!!), we took showers and headed to church. The service was great. Pastor Don talked about the importance of praying for your children and physically laying your hands on them during the prayer. Taking his message to heart, Jason and I had a special prayer with Addy before bed. We talked to her about what was happening and told her about how she'd begin to notice some changes in her food. She took it well...had a few questions...and we assured her that we'd take care of her. With that, she fell asleep in my arms.
I stayed on the couch all night holding her...feeling thankful that we weren't on a cold corner in a box.

SUNDAY:


Well, today Jason took Addy to breakfast and then grocery shopping. Armed with a list of GF foods, they hit Trader Joe's and Safeway. It took several hours to read all the labels...they both came home happy and Addy seemed excited to try some new things. Jason said the staff at Trader Joe's was EXTREMELY helpful...even told him that we could return anything she doesn't like. With the price of this food, that's something to be grateful for.

I tidied up the house and finished cleaning out the pantry. I created a GF shelf for her stuff...and I guess that's that.

Gluten Free Addy has arrived.

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2 comments:

  1. You have all come such a long way in 3 years!Sending you Christmas wishes from the Heikkinens in Finland!!

    ReplyDelete
  2. This post comes from the heart and truly warmed mine to the core. Thank you for letting us take a peak into you and Addy's world...such a blessing for all of us traveling this road. Be Blessed this Christmas Rose Family!xoxo

    ReplyDelete

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.