a gluten free life

this is samuel
today

this was samuel
in january

the only difference?
he eats absolutely no gluten.

samuel has celiac disease.

he eats no gluten
not by choice
but for his life

and now he is thriving
laughing
growing

life without gluten is challenging
there are moments where he's mad
and i mourn for him

then i remember
i remember how he was six months ago

and i rejoice.

****

There is no cure besides not eating gluten.

To learn more about celiac disease  please visit celiac.org 

And, if you have a question about Celiac Disease or how we  live with a child who eats no gluten -- ask away. What's gluten? What do we do about bread? Or crumbs?  Or dinners? It's a complete lifestyle change. Symptoms? I'm hoping to take the questions asked -- and the questions asked in emails I receive -- and put together a faq page about our own journey.

thank you and an update

First,  thank you -- thank you -- thank you, for your prayers for Samuel.

Todd ended up taking him to urgent care tonight and we found out that he has strep. I am so relieved that it is just strep and that Todd can manage it. Todd said one of the scariest moments was when the urgent care doctor asked him if he thought that Samuel's situation was related at all to Celiac Disease. If it was any bit possible that it was due to Celiac Disease, then Samuel was to go immediately  to the emergency room.  It's strange to have a little one whose medical history makes doctors so incredibly high on alert.

Todd's got his antibiotics, he's given him a dose (and some yogurt), and now he's resting. I miss that little man so much. So so so much.

Anyways, I am grateful for your prayers. And I want to thank you for responding in the way you did and for letting me use my blog to ask for your prayers. Thank you deeply.

Blessings to you all.

Rachel

lessons from starstuck

On Friday, June 24th, it will be a year since Samuel {yes, Samuel} was admitted to Children's Hospital to have an emergency endoscopy to have a sequin star removed. It seems so long ago -- so long -- especially with all the health crises that developed following that June.

I went back and read my post StarStuck and was brought to my knees. I forgot how close everything was for little Samuel way back then. And I saw and was reminded at just how strong Samuel already was -- almost as if he knew back then that he would need to be tough for the year to come.

{little Samuel last June}

And, I saw how we was already displaying symptoms of Celiac Disease last June. To think that it took until January for him to get diagnosed. So long. So so so long. I wish he didn't have to deal with it that long. That part hurts my momma's heart.

I remember walking into the local hospital {before we were transferred to Childrens} and telling the nurse that either Samuel swallowed something or he has something seriously wrong with his bowels.  That would have been the undiagnosed Celiac Disease.  That night, he had swallowed something. And that night, he also had Celiac Disease. But, I didn't know.

{Samuel in January}

What I do know? That the day of June 24, 2010 taught me and prepared me for January 17, 2011 when I walked back into the same Children's Hospital Emergency Room and into the EXACT room where I sat months prior. It prepped me. I knew what to expect, where to go, to advocate for Samuel, what to expect from an endoscopy and not to take life for granted.

These are some of my words from back then -- about a mother's intuition and trusting one self. I was getting prepared and stronger without even knowing why. I wrote:

The doctors and nurses were amazed that I  knew to bring him in.  They kept talking about mother's intuition and how they take it seriously when a parent come in as insistent as I did.  They told me that he really didn't have time to wait for me to just watch.  He was in right when he needed to be.

{Samuel this summer}

Samuel has been gifted with life so many times.

I am so grateful for that little man of mine. So grateful.

And I'm grateful that the Lord gave us mother's intuition and a fighting spirit.

So on this day, almost one year after, I give glory and thanks to the Lord. Once again, I will sing

Thank you for Samuel. Thank you.

To read Samuel's StarStuck story please click here.
To read about our journey with Celiac Disease please click here.

switching perspective

Samuel is starting to realize that there are foods that he cannot eat.

And he does not like it. Not one bit.

In fact, it makes him quite irritated. Mad. Annoyed. Sad.

And I don't like that. He's too little for me to reason with -- even though I try. I'll tell him how gluten hurts his tummy and makes him sick -- but sometimes he just gets frustrated.  And I get frustrated for him. How do you really explain Celiac Disease to a 21 month old?

So we try to eat gluten free as a family. But, that is expensive. Very, very expensive. And now, Samuel finds the gluten food and decides he should have some. So I tell him no. And he cries.

And that really hurts.

Then I remind myself that it could be worse. That there are still lots of foods that he can eat. That he's alive and healthy {as long as he doesn't eat gluten}. That I need to be grateful. Really, really, really grateful.

So I look at those eyes and in learning to be grateful for the things Samuel can have and can do it reminds me to be grateful for so many other facets of things in my life. Maybe I don't have the family room furniture that I desire -- but I have a family room. Maybe we don't get to go on all the fancy vacations -- but the yearly trip to the lake is our favorite. Maybe my house isn't always clean and spotless -- but it is full of adventure and love and laughter.

Sometimes it just takes switching perspective.

And looking at the good things in the midst of the hard things.

And letting the good win.

Off to find those gluten free cookies for Samuel....

coming to grips

Last Thursday, after Samuel's Gastroenterologist called to tell me that Samuel's biopsy was clear {thank goodness} and that it officially confirmed Celiac Disease due to the healing {along with genetic screening and normalized labs}, instead of initially rejoicing I wept. It surprised me. I wasn't expecting to start to cry over the official Celiac Disease diagnosis, and yet, once it became finalized the last four months, the last year, of sickness washed over me.

I think I was secretly hoping that it was all a mistake.

Like maybe they had the wrong labs. Or he just had a really-really-really long case of the flu. Or it was just a fluke. But, deep down, I knew. I knew he had Celiac back in early January. I knew. My momma's heart just knew.

So why did the diagnosis bring me to my knees?

I think the entire event finally caught up. I vacillated between being so joyful it was caught to being so frustrated at myself that he had to deal with it for so long to realizing that his life would never be what society deems as "normal" due to the medical necessity of him eating gluten free. And in that realization of eating an extremely strict gluten free diet came the truth that it is not a temporary thing -- but an entire life thing. His surgeon kept emphasizing to me how strict I had to be as Samuel was literally starving in January. He can't cheat. Ever.

Eating any bit of gluten would destroy that intestinal tract that has now, thankfully, healed.

It's interesting what you deal with in life that you never expected to -- I didn't really know much about Celiac Disease prior to December last year. I'd heard it and probably dismissed it as "so extreme" -- so being placed in this position has humbled me. Opened my eyes. Made me aware.

And made me an advocate.

If we're going to deal with the Celiac card then I will do all I can to get awareness out, to fight for a cure, to fight for Samuel, and to make life, especially for Samuel, as absolutely normal as possible.  This is part of my journey right now. Instead of running away, I'll run towards.

And never giving up.

Even though some days I might cry. Just a bit.

And still never ever ever ever giving up.

Rejoicing and finding joy in sweet Samuel's {gluten-free} life.

a birthday {friday} favorites

time keeps on slippin'

slippin'

slippin'

<br /> <br /> <a href="http://justsomebeautiful.blogspot.com/search/label/friday%20favorite%20things"><img vspace="none" hspace="none" alt="friday favorite things | finding joy" src="http://i617.photobucket.com/albums/tt255/ElvishAuthoress/fridayfavoritethings.png" /></a>

into the future...
{where does it go? it's too fast}

to start my list today I must begin by stating

Happy Birthday to my Hannah

{who blogs over at Aspire}

many many years ago she was teeny

{like in this sweet real film photo} 

{baby hanni}

and then as time slipped on she grew

and grew

{9 years}

{so make sure to hug those little ones as they do grow}

until now, 15 years later, this is her

{with her grandpa}

love you Hannah 

 you're a fave.

Birthdays are a favorite

even though the joke is that she's now halfway to 30

{which, by the way, is not old}

silly web cam photos of us are another favorite

 like these on the night before her birthday 

 during our 10:49 game of Blokus

 while I wrote these favorites

 {it's my turn, I'm green}

writing and playing means getting blocked

 

oh well, it was worth the laughs. :)
{these are linked with momma in focus}

web cam + family game+birthday eve = favorite

more favorites?

besides my growing marigolds?

how about this?

Samuel's biopsy report came back clear

his small intestine has healed

and his protein levels are higher

and he's absorbing nutrients

and vitamins

and fats.

He was "officially" diagnosed with 

Celiac Disease

even though it's hard

it's an answer to prayers to know

as he'd been sick for months and months and months

and now look at him

thank you Jesus
thank you.

If you'd like to link your own {friday} favorite grab the button at the top of your post, write away {or choose one of your favorite posts or pictures of the week} and then enter your link. Be sure to try to comment on those around you. Comments are always a fave!

Blessings on your Friday!

the little moments matter

The light peeked through the windows as heavy gray clouds danced across the horizon. Raindrops slowly fell, leaving splatters of dampness on the deck.

Samuel sat on his knees at our worn oak dining table. His little feet hung off the back of the bench, his yellow nuk alternating between his mouth and resting on the table. Carefully he balanced while eating his bowl of cereal splashed with lactose free milk. A late afternoon snack for my hungry boy.

{sweet blue eyed Samuel}

I watched him.

I watched as his little hands, his right wrist still sporting the hospital arm band that he keeps asking to have back on, grabbed the spoon and worked to get those round gorilla munch puffs in his mouth. A couple would fall, but he'd keep working. Sighing sighs of contentment between drippy bites.

My heart felt at peace.

As I watched that sweet boy of mine eat I began to remember. I remembered how just a mere four months ago he had no energy to eat. I remembered my eyes welling with tears as I saw him rest on the floor -- with no energy to play. I remembered how he slept throughout the day. His pale, pale face. The vacant eyes. And I remembered the pain and the look of sadness in his eyes pleading with me to make it better. The slow horrible fade.

{then}

Humbled by memory, I looked up again. His attempt at neatness was done. Now the faded lime green bowl bought years ago at Ikea was upside down. Samuel was raking round morsels of gluten free goodness into his hands bit by bit. Some made it in his mouth, the rest onto the birch colored floor below.

I knew then that I should never take him eating for granted again.

It hit me so strongly -- the need to remember -- to be grateful for the little things like eating a late afternoon snack in late May.

He couldn't do it in January.

But now, by the grace of God, now my boy can.

That is a joyful thing.

Alleluia to God, our Healer.

Thank you for healing Samuel.

{now}

{I've linked up with what is on your heart}

home. exhausted.

Just a short update.

{when we arrived this morning}

Samuel did great. I mean really great. The anesthesiologist was shocked at how calm he was in the operating room -- I kept telling Samuel how much I loved him and how I was right there and how Jesus would stay with him even after I had to leave. He didn't fuss at all. We just put the mask on him and within a minute his little eyes fluttered and he was asleep.

{first time I saw him after}

It took about 35 minutes from when I left and till he was wheeled back. Then he proceeded to sleep for almost an hour. After he woke we waited a bit, took out the iv, and unhooked the pulse ox and then we went home.

{waking up}

He's exhausted. I'm exhausted. And I'm glad it's over.

Even with the already good news -- Samuel's weight rebounded dramatically and he's no longer bottomed off the chart but has sky-rocketed to the 25th percentile -- I still feel so weepy. It's such an unnatural thing to observe and deal with -- from seeing your child put to sleep, to the monitors, and the questions, and the need to be brave. So now, I think it's kind of catching up with me.

Thank you so much for all your prayers. As I waited for him I pulled out my phone and read each of your prayers. I was so blessed.

I've attached a couple pictures from today, and I'll post more tomorrow for {friday} favorites.

{sleepy boy}

Thank you again from the bottom of my tired, but grateful, heart.

~Rachel

please pray for samuel

So today is it. One of those parenting days that you really can't prepare for, that you can't escape, but that you have to do. It's those times where you know it will just plain hard for your little one, but you have to have them go through it because you love them so much.

That's today.

I try to prep his little 20 month old mind. I talk about the hospital, and how the doctors will make him sleep, and how I'll be there, and Jesus will be in the room. I tell him. And I hug him.

It's just really hard.

I just want to stay home. And read books, and putter in my garden, and clean the kitchen, and fold some laundry, and run around out back. But, like I said yesterday, I'm going to keep up my courage. Today is meant to be today.

{keep up your courage sweet Samuel Josiah}

Specific Prayer Requests

...calm heart for Samuel. He was nervous and scared yesterday at the doctor's office
...that Samuel can deal with  having no food till almost 2pm.
...during the procedure {12noon -1pm}
...steady hand for the surgeon
...that Samuel does not develop croup afterwards
...for kind and caring staff
...that the biopsy sample sites are taken in the right spots {they'll be taken throughout the intestinal tract}
...complete healing
...strength for me - specifically when I go back to the operating room while they put him asleep
...wisdom for the anesthesiologist
...that I can feel the Lord's presence throughout the day.

Thank you. Thank you. Thank you.

for more information about Celiac Disease click on Samuel's story.

the gf peanut butter super delicious cookies

Today, we were supposed to go on a 5k Celiac Walk, but the weather here in Minnesota decided to not cooperate and instead decided to be rainy.

I toyed with going, but since Samuel's biopsy is less than a week away I thought it best to stay home and keep him as healthy as possible.

{sweet Samuel}

So instead of walking to bring awareness to Celiac Disease I thought I'd write about it in some way. I've written about our Celiac Disease Journey and how it's a struggle, but today I thought I'd share something good. Something I've learned.

That would be gluten free peanut butter cookies.

Of course, it was influenced by the numerous emails I received asking for a recipe for the cookies pictured in yesterday's {friday} favorites post.

The trick with gluten free baking? It's using a variety of gluten free flours. Gluten is the "glue" that makes our bread so doughy, and our cookies stick together, and so on -- without it there needs to be a substitute. A trick, perhaps. I've got a couple flour blends that I love - Jules and Gluten Free Mama - they are an excellent replacement in almost any regular recipe.

Besides the flour trick you can always add chocolate.

Or peanut butter.

Gluten Free {flourless} Peanut Butter Cookies

{based off recipe found in the Simply Gluten-Free Desserts cookbook}

1 cup peanut butter {use Jiff Natural}
1 cup sugar {can use white or brown}
1 egg {lightly beaten}
1 teaspoon baking powder {make sure it's gluten free}
1 teaspoon vanilla

Preheat oven to 350 degree. Grease cookie sheets or line with parchment paper {we did this}.

Blend the brown sugar and peanut butter. Add the eggs and mix. Spoon in baking powder and vanilla and mix for about 1 minute. Put some additional sugar in a small bowl. Roll the dough in a ball and then in sugar and then place on cookie sheet.

Drop cookie 1 heaping teaspoonful at a time on cookie sheets {do not make bigger}, leaving 2 inches between them to allow for spreading {which they do}.  Use a dinner fork, stick the tines in sugar, and then press the tines on the dough to flatten, turning fork 90 degrees to make crosshatch. Bake 9-11 minutes. Remove and let cool on racks {we found it best to let them sit on the hot cookie sheet for about 2-3 minutes before transferring. And to add a chocolate chip to the top.}

Makes 2 dozen cookies {which in our house would be gone in a day}.

Any other flourless or gluten free cookie recipes? Please do share. :)

it's on the books

Samuel's repeat biopsy is now scheduled.

I procrastinated for weeks calling the GI Doctor's office -- I was fearful -- of him being put asleep again, of the results, of the hospital, of Celiac Disease. I know, I know, I know. Finally, yesterday morning, after much encouraging from dear friends, I called to schedule it having the mindset of having a good six weeks to wait.

To prepare.

I was wrong.

The only date that worked is-

Thursday, May 26

It seems so soon. So sudden.

My heart doesn't seem ready to be that strong again.

But,

God knows that day already.
God knows my anxious heart.
God knows the strength that I will need.
God knows all about Celiac Disease.
God knows my little Samuel.
God knows.

So I rest in that truth.

It is well with my soul.

I love you, my sweet Samuel.

May is Celiac Disease Awareness Month - please consider sharing Samuel's story so that others can be aware and can fight for Celiac Disease awareness.  Thank you!

For more information about Celiac Disease please click here.

monday tweets

I've decided to do today's miscellany with twitter like hashtags instead of numbers. :)

#coldweatherphotos Hannah has been getting beautiful photos -- I think it's because it's been cold and windy and rainy and snowy {at least it doesn't stick} and not spring like. I love this one of my Gracie.

#willspringevercome The first of May in Minnesota was celebrated by 20mph winds accompanied with several bursts of snow showers. Oh yeah, and a high in the low 40's.  My new tweets are being accompanied with the above hashtag .  I am starting to think that my spring garden planting will be bumped back to being an early summer garden planting. Does that look like spring? That's my early morning view....

#kidandspaghetti Samuel still loves spaghetti. Now I make sure to purchase gluten free brown rice noodles {from my favorite store -- Trader Joes} and we boil up an extra pot of noodles. Samuel doesn't know the difference between noodles. {Sometimes I still miss the regular noodles.} Samuel is up half a pound, by the way. :)

#glutenfreeresults However, eating gluten-free has helped my spring allergies.  This year they're almost non-existent compared to years where they are so bad that I couldn't sit up. I went back and checked my blog archive from last year and there were multiple prayer requests for allergy relief. Ah, it makes those rice noodles taste even better.

#CeliacDiseaseAwareness May is Celiac Awareness month. This is so important to me ever since discovering that my Samuel {see his cute face below} has Celiac Disease. Those regular noodles, the non-rice ones? They are terrible for his body. The Trader Joe ones -- no harm. Please support bringing awareness for Celiac Disease. It is so serious, and needs to be spoken about. Check out celiaccentral 

#iheartmynewphone My contract finally came up with our cell phone company and I was able to upgrade my phone. My old phone was truly terrible. Really. When my new android operating smart phone arrived it was awesome. So I became the person in Costco staring at her phone in the middle of the aisle in front of the boneless skinless chicken breasts. And yes, I was checking to make sure they were gluten free. And yes, meat can sometimes contain gluten. And yes, we need stricter and more clear labeling laws. For this guy.

#support1in133 As far as labeling -- please check out this site which helps to promote clearer labeling for food labeled gluten-free. Samuel cannot have even a trace of gluten without it damaging his intestines. I do not ever want to see him as sick as he was in January and February. Therefore we NEED to have food labeled properly. I need to know that food labeled gluten free was not processed on a line that processed wheat. That's not gluten free, my friends. That's contaminated.





#2Timothy4:7 Last week was challenging. I'd love to blame it on the lack of spring weather. But it really was due to my lack of surrender and stubborn attitude. When I went to Costco -- where I searched for that gluten free food -- I found in the car my orange notecard holder of Bible verses. I began to read through them, and realized how much I need the Word and it's truth. My verse for this week? 2 Timothy 4:7

I have fought the good fight

I have finished the race

I have kept the faith.

Blessings on your Monday. And as usual, I'm linking up with my sweet friend, Carissa.