Chloe Update May 2017

I knew my message to Chloe’s doctor would begin a cascade. 

She had a couple of bouts of severe pain over the last couple of months. It knocked her for a loop. Brought panic to her eyes. Then it subsided. 

Turns out she’s been having less severe pain as often as once per week. 

The First steps to figure it out began. Blood was drawn.  An ultrasound was performed. 

The initial results were not good. Liver enzymes were up. Her common bile duct enlarged. 

Chloe had an MRCP done. The results indicated that there’s probably been progression in the Primary Scleroscing Cholangitis. But her liver specialist said that other factors might be in play as well. 

Chloe had her annual colonoscopy the next day. After a monumentally horrible clean out process, she sailed through the procedure like a trooper. 

Her GI doctor reported that visually her colon looks good. After a week her biopsy results show minimal inflammation. 

Thankfully the “knock your socks off” pain isn’t frequent. Some kids with PSC have pain that’s never figured out. 

Our scurrying for answers and to appointments and tests is over for now. 

If Chloe has another severe episode, she’ll have blood work done. We also plan to document all pain plus be ever faithful in taking her medications. 

This is another reminder that this is a long haul with Miss Chloe. Thanks for all the prayers. 

Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer.

Empowered

 

I didn’t feel empowered when I walked into that old converted house in Richmond.

I didn’t feel empowered when I was educated that abortion was safer than child birth.

I didn’t feel empowered when I was counseled to continue the process in spite of my reservations.

I didn’t feel empowered when I was given a sedative to take the edge off.

I didn’t feel empowered when I sat in a tiny room with a dozen other broken women waiting for our turn.

I didn’t feel empowered when I was herded into a procedure room.

I didn’t feel empowered when I was hurried out to recover.

I didn’t feel empowered when I drove away bleeding.

I didn’t feel empowered when counterfeit love couldn’t bear the weight of loss.

I didn’t feel empowered alone with my secret.

84% of post abortive women felt they had no option. No power to choose.

Abortion doesn’t empower. It steals. It robs. It abuses.

Real power came when I found forgiveness and healing in Jesus Christ (Acts 1:8).

By His grace, a loving husband and subsequent pregnancies followed.

The most empowering moments of my life can be found in newness of life.

Redemption. Child birth.

I will be a voice for the unborn. I will be a voice for women.

#whywemarch

Who said Perfect?

When did being a Christian mean perfection?

Sure, those who reject God want to reject Christians for their imperfection which gives them assurance that their rejection of God is grounded in reason.

They don’t understand the real power and meaning of the gospel.

Some misunderstand out of ignorance. Some choose to miss it out of hardness of heart.

Are believers helping to dispel this notion of perfection?  Have we forgotten?  Have we misunderstood?

No one is righteous. None. Not even one. (Romans 3:10)

Elite soccer teams select elite players to complete their squads. The coaches start with excellence, way beyond the average. Through strategy and the cohesiveness of the team, championships are won.

Is God merely selecting people who are extraordinarily good to play on His Christian club?

Nope.

God is calling all to Himself. Not wanting any to perish.  Not wanting any to live or ultimately to die separated from Himself. (2 Peter 3:9)

Far from perfect. He takes the least of us.

The harlots. The thieves. The murderers.

The selfish. The mean. The liars.

When we accept that we are broken. When we agree with Him that we are fallen, He adopts us into His family (Ephesians 1:5). He washes away our sin. He clothes us in righteousness. He makes us new.

All for His glory. All for His plan. All in His strength.

All because of the perfection of His Son.  All because of His sacrifice.  All because of His resurrection.

I still fall short. I still stumble. I still fall.

By His grace, I am striving. By His mercy, I do good.

I am a Christian.  I’m not perfect. He is.  I’m not strong. He is.

An imperfect Christian is not a gotcha moment. It’s not hypocrisy. It’s not a contradiction. It is truth.

Because He is perfecting me. I want to love like He loves. I want to see like He sees. I want to be like He is. I want to think like He thinks.

My desire is to be a reflection of the Perfect Christ.

I want you to see Him in me.

Don’t let my imperfections cloud your view. 





Update for Chloe…April 11, 2016

Chloe had a regular check with her GI doctor at Children’s Hospital of Pittsburgh on Monday. It’s been about six months since her last follow up appointment. 

Her lab results all looked good. One liver enzyme was elevated, but most likely it can be attributed to growth rather than her liver disease since the other enzymes are normal. 
Her doctor was mildly concerned that her growth had slowed a bit. It is not unusual for Crohns patients to have their growth plateau early.
A bone age study was ordered just to be on the safe side. It simply was an X-ray of her left hand. Evaluating Chloe’s growth plates allowed the interpreter to compare it with other data collected from lots of kids to determine an estimated bone age and maturity.
Chloe’s bone age is normal…actually a little younger than her chronological age. She still has some growing to do.  In fact, the projection for her full adult height is 5′ 9″. She just reached 5′, so it looks like we can expect her to grow like a weed these next couple of years.
She will be scheduled for her annual colonoscopy. Her last one was in May 2015. Though it’s no fun, it will be helpful to have biopsies to screen for cancer and also to show the state of her disease. To see if, at the cellular level, her colon is in remission and how well it is healing.
Once again, we are reminded that this is a long haul, but are so very grateful for remission and for Chloe’s growth. 

Psalm 103: 1-5
Bless the Lord, O my soul;
And all that is within me, bless His holy name!
Bless the Lord, O my soul,
And forgot not all His benefits;
Who forgives all your iniquities,
Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things,
So that your youth is renewed like the eagle’s.

Miracles from Heaven

To celebrate Todd’s birthday, I took him to a fabulous dinner at a restaurant that has super tasty gluten free food. Real gluten free. Not just food with the gluten-ful food taken out, i.e. hamburger without a bun. Extra bonus:  the menu had gluten free chocolate cake to happily end his birthday meal.  


That’s about as far as my plans went. Not wanting to rush home, he suggested a movie. There were only two choices at the Pitt Theatre:  Batman vs. Superman or Miracles from Heaven.


We chose Miracles from Heaven. Enjoying each other’s company, we laughed out loud at the previews. We settled in for the feature presentation.


Almost immediately, as the little girl in the movie became gravely ill, we turned to each other in agreement that this true story might hit a little too close to home for us.


As the characters on the screen began to chase a diagnosis for their daughter, so many personal scenes jumped into my mind and emotions bubbled back to the surface from our very own struggle with Chloe’s health. 


I could relate to this desperate mother, as she watched her child in pain and languishing, forcefully questioning a doctor who said that everything was normal or that it was only lactose intolerance.


The fear.  The anger. The sadness. The grief.


All threatening to swallow up the joy and the hope…and my faith.


Like a toddler, I assumed that when I asked nicely.  When I said “please” and “thank you,” surely God would answer my prayers exactly how I wanted.


When His answer wasn’t a resounding “yes,” I acted like a petulant child who didn’t get her own way.


Sometimes God’s answer is “yes.”  Sometimes He says “wait,” “not yet,” or “no, not on this side of eternity.”


His desire is for me to come to Him. Fully surrendered. Submitted to His will. Trusting His plan. Seeking His comfort. Resting in His peace.


Chloe is in remission. It’s been nearly two years since those super scary months of tests, hospitalizations and new diagnoses.




How many miracles did I miss while I crossed my arms over my chest, furrowed my brow and stomped my foot at my Heavenly Father?


When my faith was rocked to its core, I wanted to talk to Him. I wanted to trust, but somehow God just didn’t seem so safe anymore. I stepped back when I needed Him most. 


The movie, Miracles from Heaven, reached right into my healing heart. Reminding me that my God loves beyond measure and exceeds my understanding. 


A miracle itself. 


In the midst of sorrow and pain, He is good. He is faithful.


Joy, beauty, each small triumph. All sweet gifts from His tender hand.  


Lord, give me eyes to see.  



Matthew 13:16.
But blessed are your eyes for they see, and your ears for they hear…

The Finish Line

But run, run: always run.
The Hermit, The Horse and His Boy, C.S. Lewis

 

Shasta was spent from a wild race on horseback through the desert. Pursued by a lion and fearing for his life and the life of his companions, Shasta saw the finish line ahead. His relief was quickly replaced by the Hermit’s demand that he must keep going.  Weighted down by the exhaustion and the unfairness, Shasta encounters Aslan on his path and begins to truly understand the Great Lion and who he is himself.

A few months ago, it became very clear that my father’s living situation had to change quickly. Dad has dementia. He had been able to live beside my in-laws who could look in on him and help with medications and meals.

For two-plus years this arrangement had allowed my dad to live relatively independent. But seemingly overnight, it was thrown into crisis by what could be described as a fit of anger, hostility and anxiety directed toward those who were caring for him.

I can only imagine the fear when one cannot remember. How can you trust those who are near to you when your memories are mixed up?  It was a very difficult time.

Through wise counsel and prayer, we were steered toward an assisted living apartment nearby. Side Note:  My dad was completely against moving, but through this period of time the Lord worked in him, and he had a change of heart that allowed him to actually look forward to joining his new community.

Dad moved into his new place about two weeks ago. We had crossed the finish line.  Then again, maybe not.

 

IMG_2819

In addition to frequent visits, our phones have been ringing. Lots. Daytime. Nighttime. Any time.

With Dad’s confusion, we’re his go to.

But that’s ok. It’s a blessing, really.

Like Shasta, I saw what I thought was the finish line.

Like Shasta, I felt the unfairness of 2 AM calls.

Like Shasta, I have met my Savior on the path. I am understanding God’s heart more fully. I am finding out who I am and who He wants me to be.

Hebrews 12:1-2
…let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.

I keep on running. Eyes focused. Looking upward. Pressing forward.

There’s a lot of transforming yet to do with me.

I’m not done.

The finish line is ahead.

Matthew 25:21
His lord said to him, ‘Well done, good and faithful servant; you were faithful over a few things, I will make you ruler over many things. Enter into the joy of your lord.’ 

All Aboard the Autoimmune Express!

Bailey had her well check-up last week. Her thyroid is enlarged. Blood work results are indicating that an autoimmune response is causing the trouble. 

Thankfully, right now, her lab results are within normal ranges, so the plan is to wait and repeat the tests in about two months. 

During this time, Bailey has agreed to try some natural supplements and to make the dietary change of eating gluten free. All will be done in an effort to decrease inflammation and to improve her thyroid function. 

When Bailey’s PA said it looked like an autoimmune issue, I had a most inappropriate response in the patient room. I laughed. It seems absurd that another autoimmune disease should be added to our growing number.  To date, we can count 3 with celiac disease; 1 Type 1 diabetic; 1 Crohn’s disease; 1 PSC; and 2 Thyroid disease.

All Aboard!  Bailey had been the one without anything.  But the Autoimmune Express has stopped to pick up another passenger from the Donaldson crew.  

Our prayer now is for the measures that we’re taking to help Bailey’s thyroid to work more effectively and for her to feel better. 

Bailey’s verse has been Proverbs 3:5-6. Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your paths

As we’ve seen before, we can only take it one step at a time. Prayerfully considering each move as we research and educate ourselves. Trusting in Him to direct our path.