What a Year!

The second of February marks the one year anniversary of following the Specific Carbohydrate Diet (SCD) for Chloe and me.

The last two weeks Chloe resumed a gluten free low residue diet which was easier to comply with during her hospital stay for the rotavirus and also seemed prudent as she faced a colon clean out for a procedure which was eventually cancelled.

For eleven and a half months, though, we fanatically adhered to this gluten-free, grain-free, lactose-free, sugar-free specialized diet.

When we began on February 2, 2013, we were looking for a way to stop the cycle of her out of control autoimmune response that was causing the ulcerative colitis and its symptoms of loose & bloody stools, pain & cramping, overwhelming urgency & overnight potty trips, fatigue & anemia.

We were looking for a way to bring Chloe’s symptoms under control. We were looking for a way to find relief and healing for her without beginning more powerful medications or interventions.

She was only 8 years old. We had to try.

Initially, the introduction diet was terribly hard. For five days, Chloe was sick. She experienced the flu-like symptoms known as die-off.

But then, the nearly constant stomach pain Chloe experienced was gone. Even my regular headaches disappeared as I participated in the diet simply as a show of solidarity.

The restrictions were tough; although, even Chloe agreed that the improvements in her health were worth saying good-bye to certain foods. We decided to keep adhering to the SCD.

In June, we saw a decline in her health with significant weight loss and returned anemia. We feared that the SCD was not enough to break the cycle of ulcerative colitis. But the diagnosis proved to be c. diff instead.

The c. diff plagued her through rounds of antibiotics. Into the fall, her symptoms from the c. diff made it challenging to be too far from a bathroom. She often rushed off the soccer field. Her energy was low as she fought this insidious bug.

As our first Thanksgiving and Christmas on the SCD approached, we persisted on the diet even though it was difficult to see any positive effects because of the c. diff.

The week before Christmas, Chloe received a Fecal Microbiome Transplant (FMT) for the recurrent c. diff. Within a day, it appeared that the procedure had failed to cure her which was confirmed with another positive stool study.

The first week of 2014 she began another course of antibiotics while she was scheduled for another transplant.

Within a week she was hospitalized for severe dehydration from what turned out to be diarrhea from the rotavirus. As the doctors searched for a cause, she tested negative for c. diff.

Ultimately she tested negative three times for c. diff. Perhaps the combination of the FMT, the round of vancomycin and the clean out caused by the rotavirus drove the c. diff out. Her second FMT was scratched.

Which brings us back around to our first SCD anniversary. All the changes over the last two weeks have left Chloe in a flare of the ulcerative colitis. With the c. diff gone, it is time to go back to the SCD. We begin again on Monday, February 3.

Looking back, there were some very difficult times. With Chloe’s health. With happily complying with the diet.

However, we stand ready to begin again. Certainly knowing more of what we are getting into.

We have been tested, but not defeated. We are wiser, but not jaded. We are realistic, but hopeful.

On Monday, we take another step in this journey with Chloe and ulcerative colitis. Each step dependent on Him, our Great Physician, our Redeemer, our Healer.

Psalm 37:23-24
The Lord makes firm the steps
of the one who delights in him;
though he may stumble, he will not fall,
for the Lord upholds him with his hand.

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Chloe & me sitting in her hospital bed at Children’s of Pittsburgh.

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Longing for the Forbidden

Genesis 3:2-3
The woman said to the serpent, “We may eat fruit from the trees in the garden, but God did say, ‘You must not eat fruit from the tree that is in the middle of the garden, and you must not touch it, or you will die.’”

Eve’s longing for what was forbidden led to her fall, the fall of Adam and the fall of mankind. Ultimately, it was about trusting God. Trusting His plan. Trusting that He was good, loving and true. Believing Him and obeying, even when Eve’s reasoning, understanding and desires enticed and tempted her away.

There was so much to satisfy in the Garden of Eden. The beauty. The freshness. Walking with God. Talking with God. It was perfection. Yet Adam and Eve were led astray, sacrificing their relationship with their Creator, wholeness and fulfillment.

The Specific Carbohydrate Diet limits Chloe’s (& my) diet significantly. Yet there are so many wonderful foods that we can eat. And for Chloe, there has been the added benefit of feeling better with little to no belly pain.

Although it is difficult to isolate the diet’s effects, I believe it has improved her condition. It has allowed, for the time being, for her to remain on a lower level of medications and intervention.

Sometimes, however, she longs for the forbidden. Me, too. Like Eve, there is something that blinds us to all the positives. That sends us into a spiral of discontent. There is something that tempts us to cross the line, refusing to trust and obey.

1 Corinthians 10:13
No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.

Right now, Chloe is tapering on her antibiotic for the treatment of C. Diff. She will be retested later in November. Her anemia has improved, but her hemoglobin is still below normal at 10.1. Her sed-rate indicates inflammation, but other inflammation markers are normal. Her growth has flattened out over the last year. A mixed bag of test results.

We will continue to follow the SCD until God turns our path. We continue to struggle at times wondering if healing will come. If His healing looks like our expectations. If we can trust Him even if healing does not come. If we can trust Him even if our winding path leads us where we do not want to go.

Trusting when we don’t understand. Believing what we can’t see. Following God is not easy.

But He is good. He is faithful. He is worthy.

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Chloe’s leftover SCD-legal pumpkin cheesecake from her 9th birthday.

Altoona Take Steps 2013

Chloe’s UC Corps walked on Sunday, September 29 in Altoona Take Steps, a major fundraising campaign for the Crohn’s and Colitis Foundation of America.

Chloe’s team was honored to be the top fundraising team at this local event raising $3,530.11 to fund research, support local programs and find a cure for inflammatory bowel disease.

On the afternoon of the walk, Chloe was encouraged in meeting the event’s honored hero, Laci, a young college-aged woman with Crohn’s disease.

She had a great time throughout the fundraising season serving coffee at HeBrews, selling bunches of books at the Book Sale and handing out lollipops and lemonade at a home soccer game.

Thanks to all the friends and family who donated generously and took time to attend these special events. Not only did you help fight for a cure, but you let a little girl know that she is not alone as she deals with a difficult disease.

Many, many thanks.

Donations can be accepted through the end of October 2013. Click here to check out Chloe’s UC Corps or to Donate!

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Gathering Clouds

Ever been caught in a torrential downpour and thunderstorm?

A storm can come up quickly, but most of the time, there are warning signs. The changes in pressure and the increased clouds. Leaves flip over upside down as the wind changes. The air can almost feel electric. Signs that something is brewing in the atmosphere.

Relating to Chloe’s ulcerative colitis, I see gathering clouds. Signs of a continuing storm in her body. Even through diet changes and medication, she still is struggling to get the upper hand.

Her hemoglobin is still low; although not quite as low as in July. Her color looks poor probably due to the anemia. She doesn’t eat much whether from true loss of appetite or from reasons in her mind. Her weight has fluctuated minimally within a couple of pounds up and down. Her growth seems slow. The bathroom trips and the state of her motions all paint the sky with an ominous glow.

It feels like a storm is on the horizon.

Am I ready? Is she ready? Is it the C. Diff? Is it the UC? Can we face a whirlwind of testing, procedures, results?

I don’t want to acknowledge that things are not sunny and fair. Yet the increased pressures and whipping gusts force me to look into the eye of the hurricane.

I am afraid. I want the clouds to disappear. I want Chloe, simply, to be well.

As my heart hammers in my chest, I hear my Lord. As a cry threatens to escape from my throat, I hear my Savior.

“Quiet! Be still!”

The wind is His to command. The storm is under His authority.

Our very circumstances, known and unknown, changed or unchanged. Stormy and tempestuous or smooth and fair. With Him, in everything, there is His perfect peace.

Please guide me, dear Lord. Please calm this raging storm.

Mark 4:37-41
A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, “Teacher, don’t you care if we drown?”

He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm.

He said to his disciples, “Why are you so afraid? Do you still have no faith?”

They were terrified and asked each other, “Who is this? Even the wind and the waves obey him!”

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Sweet Nothings

Donaldson birthday tradition includes sticky buns for breakfast on your birthday.

Unless you have celiac disease and are gluten free, then our adjusted birthday tradition allows you to choose a gluten free breakfast treat.

I have made gluten free cinnamon rolls, coffee cake, banana bread and doughnuts. I even grilled the gluten free cinnamon buns per Todd’s request last April.

Abby began our Fall birthday bonanza on Wednesday morning. Over the next couple of months, we will celebrate birthdays for our five kiddos.

For Abby’s birthday breakfast, she chose gluten free cowboy coffee cake. Her birthday, her choice to make.

But I could see the fresh wave of sorrow cross Chloe’s face.

I sometimes feel like I am stuck between a rock and a hard place.

Many cultural and family traditions are centered around food. These sweet nothings feel far from empty or unimportant when you are on the outside looking in.

I want to joyfully celebrate. I want to honor our traditions. I want to treat Abby specially on her birthday without causing Chloe to stumble.

Coffee cakes. Cinnamon Rolls. Doughnuts.

Sweet nothings? Not really.

Putting others first. Sharing someone’s joy even in your own pain and loss. Seeking God for completion, strength and grace for each moment. Loving when it isn’t easy.

In the midst of the others’ pleasure and merriment, it feels like a bitter lesson wrapped in a new and changing family tradition for Chloe as she and I adhere to the Specific Carbohydrate Diet for treatment of her ulcerative colitis.

I hope and pray that each celebration can be shared with a heart softened by love and increasing maturity. That each occasion will produce a sweet spirit and gentle character in her. In each of us really, as we lay down our own wants, desires, needs and disappointments. By abiding in God and in loving one another, our joy is made complete.

John 15:5, 9-13
“I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing…“As the Father has loved me, so have I loved you. Now remain in my love. If you keep my commands, you will remain in my love, just as I have kept my Father’s commands and remain in his love. I have told you this so that my joy may be in you and that your joy may be complete. My command is this: Love each other as I have loved you. Greater love has no one than this: to lay down one’s life for one’s friends.

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Grilled GF cinnamon rolls from Todd’s birthday last April.

Whatcha Eatin’?

I can’t remember the last time I had a PBJ. It used to be a staple in our household. My kiddos loved a PBJ, fruit, carrots and milk for lunch. And I figured if it ain’t broke don’t fix it.

I remember playdates where we’d line up slices of bread and slather them with peanut butter and jelly and smack them together in assembly line fashion. There is just something about a peanut butter and jelly sandwich that tastes better when someone else has prepared it or at least shared the job.

Then a diagnosis of Celiac disease for Timothy, Abby and Chloe entered our lives. Gone was the fluffy store bought loaf of bread. Gone was the ability to easily eat with others.

We became a high maintenance family that required something different than our friends’ regular pantry items. We began carting along our own food not wanting to put an extra burden on others to comply with our diet needs.

But there have been many who have gone out of their way to accommodate our gluten free diet. There are those who have sacrificed convenience, studied labels, incurred added expense, and stretched out beyond their culinary comfort zones.

When we walk into a friends’ home, it is such a relief to be able to fully accept their hospitality. We truly relish those sweet meals because we know the love and the consideration that went into the preparation.

Truly, it is a precious gift.

Relationships are not easy or tidy or efficient. True love accepts that and gives anyway.

1 Corinthians 13:4-7
Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things, endures all things.

Galatians 6:2 Bear one another’s burdens, and so fulfill the law of Christ.

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Chloe Goes to Camp

Tomorrow Chloe goes to camp at New Life Bible Camp for the week. She hasn’t packed yet; not because she didn’t want to. I was too busy to attend to that today, so I put it off for tomorrow right before camp starts.

I also put off planning what she will eat while she is there. The last few years with the gluten free diet, I have remade the menu to meet our kids’ needs. I arrive with plastic tubs full of food and a copy of the made over menu with specific instructions.

This year Chloe’s diet is even more restrictive as she and I continue to follow the Specific Carbohydrate Diet. I am looking at the camp menu, and am trying decide whether to cry or to scream.

Five full days of meals and the only things I circled that I do not need to substitute for are possibly eggs as long as no milk is added, broccoli as long as it is fresh or frozen, sliced pineapple as long as it is fresh or canned in its own juice and a hamburger as long as it is without a bun and doesn’t have bread crumbs or any other offending additives.

I am overwhelmed. To scream or to cry? That is the question.

I should be excited that she is feeling well enough to do this. I should be thrilled that there is a camp nurse to help give out her medications. I should be delighted that she can forge deeper friendships with her counselor and cabin mates.

But right now I feel angry that I have to work so hard to make it normal when it isn’t normal. I am mad that the American diet is so full of foods from the SCD’s illegal list.

I am sad that Chloe struggles to feel well. I grieve over the isolation and her ability to “fit in.” I miss the simplicity and the ease.

Please know that I recognize that this challenge pales in comparison to what others experience. As I gripe about which foods, many go or have gone without completely, even some who serve this summer on the camp’s staff.

The week she has been waiting for with anxious anticipation starts tomorrow.

What a blessing for her to go. What a chance to experience the fun and the independence. What an opportunity for Chloe to grow in grace and hear spiritual truths.

There is so much to learn for each of us.

With a deep sigh, a refocused perspective and a prayer, back to the menu I go.

Philippians 4:6
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

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Chloe, on the right, stretching during soccer camp.

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Chloe showing her rabbit to campers.