To the penny

Today has been a whirlwind at Childrens Hospital of WI for Shelby. As I sit for the final appointment today on this 18 month saga of “What’s wrong with her gut?” I am awestruck by how, when asked, God orchestrates every detail – to the penny.
While at the Ronald McDonald House at the Mayo Clinic last January, I was short a quarter to do the loads of laundry I needed to do. I had 3 quarters – needed 4-a very tight time schedule and a sick kid. I walked into the laundry room and found this:

  
Quarters laying there. Ok, there is never money just laying around the Ronald McDonald House, y’all. I mean never. 

But that day, as I stood in disbelief that God had taken care of this detail, I learned that God is in the details. The littlest ones – when He is asked!

Today I was reminded of His provision again. Last year, we learned big details along the journey to figure out this gut wrenching puzzle. Now, we are down to finding a needle in the haystack. Today’s appointments have been riddled with discussions with a team of at least 8 doctors, working to find the source of Shelby’s stomach pain. 

The plan was still being tweaked when we were told to grab a break and some food. Shelby and I ventured to the new cafeteria. Time was tight, prayer warriors were praying, and we were waiting. I took one bite of my grilled cheese, internally anxious about the doctors finding the cause, and I looked over at the table next to us. This is what I saw:

  
4 pennies. I immediately was reminded of my lesson in the laundry room that God is in the details. Even small details. Our path needed quarters, or big answers, while at Mayo and now needs tiny, incredibly small, little bitty valve issues answered. A needle in a haystack. Details – down to the penny. God’s got it covered.

  

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Gratitude vs. Anger

I recently watched a video series that one of my former pastors produced. Dr. Ed Dobson, Pastor emeritus of Calvary Church in Grand Rapids, Michigan, was diagnosed with ALS several years ago and made a 7 -10 minute videos about suffering with ALS and its diagnosis. In the sixth video, Dr. Dobson makes a statement that with a diagnosis that is a chronic illness diagnosis, people are usually full of gratitude or angry.

I have chewed on this thought all week. Throughout the journey of trying to figure out how to make Shelby’s stomach work again, I have not been angry. We have met many parents that are frustrated, as I am at times, but very few that are angry. At the same time, I have not met many that are full of gratitude. But I am.

Many, through this journey, I have noted how positive our family has been. This week, we had more difficult news come our way. Paul has injured his back somehow, and we meet with the neurosurgeon in the morning. Summing it up, the school year alone, we have endured a house fire, a broken hand, an emergency hysterectomy, a broken toe, and now a broken back – as well as Shelby’s battle of the unknown attack by her nervous system and a non-working gut. One of these is a big deal. Together, it’s one wild ride! 

So why the positivity? Why do I have gratitude? Dr. Dobson reminded me that the epistles say, “In all things give thanks.” The Bible does not say “For all things give thanks.” Therefore, in every situation, IN ALL THINGS, I will have gratitude. I may not be thankful for every situation but I can be thankful in every situation. 

Chew on that as you pray for us. 

 

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Strong and Thankful

I stood in church today during worship and wept. Cried. Tears pouring down my face. Overwhelmed with the week ahead – and wondering if I was strong enough. See, this week is HUGE for us. After having emergency surgery two weeks ago, I will board a flight with Shelby on Black Friday to fly to University of Wisconsin to see the Chelimsky team on Monday and Tuesday in hopes of answers and treatment for Shelby’s miswired body.

So much has gone into this trip. We have waited for the appointment with this team of doctors for a year. That also meant Shelby has been ill over a year. As I dried my tears that just kept running during worship, I asked God “Please let them figure this out. Someone has to know what is wrong with Shelby.” My mommy heart was broken. As the song “Your Love Never Fails” was sung, I got a little mad. The line “Pain comes in the night, but joy comes in the morning” was ringing in my head. I thought “When Lord? We chose JOY, but when will we know what is wrong – she needs to be better!?” Almost clearly I heard “I KNOW WHAT IS WRONG. I CREATED SHELBY AND I LOVE HER MORE.”

Took my breath away. God does love Shelby more than me – He gave me to her to raise. And as her mom, I want to know what is going on with her wrecked, dysautonomic body. But at that moment, and since, I have been calmed. God knows. God knows that is wrong. The God who considers the lilies of the field, the God of Abraham and David, the God who created everything knows what is wrong with Shelby.

As I sat down following worship, Joe, our pastor, began to speak from Proverbs 24.  One verse stuck out clearly: Proverbs 24:10 If you faint in the day of adversity, your strength is small.

Many times this year, as I shared our journey through dealing with pain conditions with others, I hear “You are so strong!” My boss told me a few weeks ago, prior to my surgery, that he did not understand how we did it – that he believed that something like Shelby’s illness would devastate his family. His last statement was, “You live your faith – and it is strong.”

When Joe talked about this verse, that conversation rung in my ears. The verse means that when one faces adversity, you must have strong faith – strong reliance on God – or you may faint.  Now, I started laughing in church because literally Shelby does faint from her wrecked body causing havoc, and she is the strongest person I know! But God does not mean this type of fainting – but the fainting of pulling away and not giving glory and thanks to God for everything.

And that IS how we stay strong – acknowledging that God has allowed this journey and will give us strength to get through it while we give thanks for the blessings we do have, such as our wonderful primary doctor, the RMH House where we will and have stayed, the people that have so generously carried us financially this year when we needed help, the bed I sit in now as I write this, the meds that are keeping Shelby alive, the food I had for dinner that filled my tummy, the warm blanket on my toes…small things  and big things. A heart of gratitude and acknowledgement that the giver of all good things is God and He loves Shelby, me, YOU more than we will ever know. This acknowledgement gives credit to God who makes us strong.

A year ago tonight I was in the ER with Shelby. Tomorrow marks the one year anniversary of doctors overdosing my child.  Wednesday marks one year since 2 doctors tried to medically kidnap my child. Thursday marks the one year anniversary of having Thanksgiving at AMH with my mom after her stroke. Lots of cruddy, no good, crazy, wacky happenings that I still can’t believe happened. But now, a year later, looking back, we have not fainted. We are strong. We are stronger. And God made us stronger through the prayers of others, and has brought us tremendous wisdom as we continue to give thanks to God.

Another verse from today was Proverbs 24:5 A wise man is full of strength, and a man of knowledge enhances his might, for by wise guidance you can wage your war, and in abundance of counselors there is victory.  I ask for your prayers for strength. I ask for you to pray that we gain knowledge on how Shelby can live in her body and eat again, so that she can wage war on a life of pain. I ask that you pray for the many counselors that have guided us: doctors, friends, researchers, and other medical personnel – that they have wisdom and knowledge to share and that they know how great God is and how very thankful we are for their counsel.

We are strong. We are thankful. Strong and Thankful. Happy Thanksgiving!

 

 

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10 months and counting…

10 months. 260 days today since Shelby fell ill. 6,240 hours of pain. 374,400 minutes of wondering what is wrong with her abdomen. But who is counting?

Shelby is. I am. We all are. But we are not counting backwards, but looking forward towards a trip to Wisconsin where a team takes on dysautonomia and challenging gut issues daily. We do not know a date but only know that the team has accepted her case.

As we wait anxiously and expectantly that the team will have an answer, a treatment, a plan to let Shelby be pain free and eat again, I have pondered about the journey we have been on.  When I started this blog, my intention was to write frequently. But as Shelby’s health declined more and more, it became hard to keep up. Squeezing in a Facebook post to let family and friends know what was going on was a challenge at times.  So as we await communication from Wisconsin, I thought I would recap the 10 month journey.

Before we walk the journey of the last 10 months, it is important to know that Shelby is a rock star in managing physical pain.  In 2008, she hurt her ankle when jumping off of a trampoline. Reflex Sympathetic Dystrophy (RSD), also known as Chronic Regional Pain Syndrome (CRPS), set into her left foot. In 2009, she went into remission after intensive physical therapy, only to flare in 2012. After numerous epidurals and sympathetic nerve blocks to control the pain, Shelby attended the Mayo Clinic Pediatric Pain Rehab Clinic (PRC) in summer 2012 and learned to live with chronic pain. She went into her freshman year at Sam Houston High School as a confident, strong young woman who served in Texan Corp, as president of Young Life and as an AVID officer, and who participated in drama and yearbook. Shelby was diagnosed with neuro-cardiogenic syncope and Ehlers-Danlos Syndrome type 1 in 2013, but she worked hard to create a life full of living, helping others, and working towards her goal of a career in medicine.

Columbus Day – a day off! Shelby and I were shopping with her friend Olivia and she said her stomach hurt. Nausea followed and by Wednesday, October 15, Shelby could not stand as the pain was so bad. Into the ER we went, expecting a gallstone, a kidney infection, a something easy. Shelby was admitted for 6 days, even participating by Facetime to be inducted into the National Honor Society at Sam Houston High School. Told it was probably just a virus and weird body response, Shelby went home eating a soft, low fat diet.

10 days later and 10 pound lighter, Shelby passed out from the pain. Into the hospital for 17 days – with every diagnosis thrown around that a private, non-research hospital would think of – h pylori, obstruction, gallbladder disease, kidney stones – even porphyria. After every test came back normal, near normal, slightly off but not definitive, a GI doctor looked at me and asked, “Can’t you just call your friends at Mayo and have them figure it out?” I had to reply, “Just because our last name is Mayo does not mean we have a team of doctors at our disposal!”

A second opinion from Children’s Dallas urged us to self-refer to the Mayo Clinic. On November 18, we completed the referral process for the Pediatric Diagnostic Clinic at Mayo to see Shelby.  At the end of that week, Shelby was walking like a drunk woman! Tremors filled her body and she acted drunk. We boogied back into the original treating hospital for the 4 worst days ever. Shelby was overdosed on medication by a doctor, we were told all of Shelby’s symptoms were in her head 36 hours after the overdose, and were reported to CPS for medial neglect of Shelby. I am not going into more details at this point, but continue to stand amazed that after 30 days inpatient and an overdose by a doctor led to a CPS report on us. We left the hospital and maintained a daily therapy routine, where Shelby saw specialists, physical therapists, psychiatrists, counselors to keep her alive until we got to the Mayo Clinic.

December 16 brought another dark day, as Shelby was taken with lights and sirens to Children’s Dallas with seizures. No meds worked – and after testing, we learned that the non-epileptic seizures were her body’s response to pain. Pain so bad that Shelby passed out and seized continually. Shelby was sent home on pain medication and we counted the days until we left for Mayo.

Shelby awoke thrashing over the holidays. Her legs were moving all over the place! After our fabulous PT suggested looking at restless leg research, I read that antacids and antihistamines made restless leg worse. Of course, that’s what I had given her prior to bed. Three days later, I weaned Shelby off of Prevacid – and her tremors stopped. Completely. Her pain was still bad and seizures continued, but her tremors were gone. Although the tremors were gone, Shelby had drop attacks, where he legs refused to work, that remained.  What was it about Prevacid?

We would find out at Mayo. On the Friday of our first week at Mayo, Dr. Rayna Groethe, probably the smartest woman I have ever met, scoped Shelby.  Dr. Groethe, a tall woman, came charging into the waiting room to talk to me after the scopes. She explained that Shelby had stomach ulcers and she did not believe that Shelby could process medicines so she was testing for that. CONFIRMED!  A ZEBRA had been found amongst the sea of horses at Mayo! Further testing showed that Shelby does not have the liver enzymes to process 3 major categories of medicines! At least we now knew this information, but the treatment for ulcers is not medicine that Shelby can process. In addition, gall bladder testing, MRI testing, and the scopes all showed that Shelby’s gut was acting in a hyperactive state. Dr. Groethe stated this was the first case of a child diagnosed with a HYPO-motility disorder now demonstrating a HYPER-motility issue. After a week of gut rest with a NJ tube and feeds, testing for mast cell activation disorder, and a lot of physical therapy, Shelby was better and we returned to DFW after 5 weeks of testing and treatment at Mayo.

On the drive home, I attempted to schedule follow up appointments, only to find that the doctors we had in place that sent us to Mayo were not comfortable treating Shelby upon our return. SHELBY IS TRICKY  – we heard over and over again. In came our wonderful doctor, Dr. Michele Burzynski, who coordinates Shelby’s care and treatments.

After returning, Shelby attempted school for 3 days, and attempted to eat, and live. Downhill, rapidly, Shelby went. Further follow up testing was done locally and Shelby became unable to eat anything without vomiting. First a PIC line was placed for feeds and then a Groushon Catherter was placed for IV nutrition in April and May.  Once nutrition improved, Shelby was able to walk freely! Less use of her wheelchair and less drop attacks with her legs but more constant stomach pain ensued. In late April, Shelby was sent to UT Houston to their dysautonomia neurologist for evaluation. Dr. Butler agreed to take Shelby as a patient and into their research program, and suggested that we see Dr. Van Arsdall, the GI that specializes in dysautonomia at UT Houston. Dr. VanArsdall, a wonderful GI, has completed testing and now referred Shelby to the Chelimsky team at Children’s Hospital of WI – as they do tricky all the time.

Through it all, discussion about Shelby’s stomach focused on mast cell, gall bladder disease, median actuate ligament syndrome (MALS) and  sphincter of odi dysfunction. Because Shelby has Ehlers-Danlos Syndrome, which is a connective tissue disease where collagen (glue that holds your body together) is under-produced, and because she has a pain condition where her brain perceives pain differently, SHELBY IS TRICKY.

So now we wait. Patiently. Expectantly. In hopes that Shelby will be able to Eat. Drive. Walk. Stay alert. Sleep. Run. Attend school. Work. Skip. Swim.  Go to a restaurant. LIVE AGAIN.

To join us in helping Shelby LIVE AGAIN, we are counting on donors!

http://www.gofundme.com/jnh9wc

1000 give $10 in 10 days! Please consider joining our team!

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For I know the plans I have for you…

I have the Bible Gateway ap on my phone. It comes in handy when I want to look up a quick verse about what God says and I do not have my Bible with me.  Today’s verse is one of my favorites, but one that can be perplexing to me as well:

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Standing alone, this verse perplexed me. I love this promise, but as Shelby fell ill again this fall, I had a hard time believing that God was there to prosper me, or to keep Shelby from harm, or that the plans that were shaping up around me were of God at all. But they were.

Shelby fell ill on October 13, and was hospitalized 4 times from October 15  and the end of December. Through these visits, we still had no answers as to why she was so ill with stomach pain. Stomach pain led to medicines and treatments and then the inability to walk correctly – then the inability to walk at all at times. What was going on with my child? Why is God not providing the right answers for Shelby? Where is the keep from harm business that God so beautiful put into one of my favorite verses?

Several were praying for Shelby. I so wanted to see a clear answer to prayer and be able to say “See what God did!” But, in all of my asking others to pray and praying for God to fix the situation, I was wrong.

The following two verses follow Jeremiah 29:11:  Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. (Jeremiah 29:12-13).

I was not seeking God with all my heart. I was seeking a solution. I wanted a fix. A quick one at that – I mean, who wouldn’t with a child ill as Shelby was all fall?

The biggest turn came for me when the pastor and elders of the church came to pray over Shelby, anointing her with oils. In this prayer time, I was reminded that Shelby belonged to God. I am her mom, but God loves her and cares for her more than I ever can. He did have a plan for her – and He is allowing this path to happen. God wanted me, wants all of us, to seek Him with our whole heart. Not seek a solution to a problem, but seek Him.

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Cinderella Charity Ball 2015 (aka GO SHELBY GO!)

Go Shelby Go!

The Deep Down

Shelby Yesterday afternoon, I received an invitation in the mail to the 2015 Cinderella Charity Ball. This is the 55th annual charity ball to raise money for the Boys and Girls Clubs of Arlington, TX. Can you imagine my surprise when I saw the photo on the front of the invitation? It was my daughter’s friend, Shelby Mayo.

Shelby’s mom, Sara, is one of my good friends. I met her in 2013 when we first came to the U.S. from Egypt and I first registered my daughter, Randa, in the Alternate Curriculum at Sam Houston High School. Randa has autism and had never been in school during the twelve years we lived in Egypt. It took her a long time to adjust to the rigorous schedule at school and while she seemed to get along okay (sort of) with the teachers, she wasn’t making any real friends.

Shelby…

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God is in the Details

This is a repost from January 29, when Shelby and I were at the Mayo Clinic in Rochester, MN.

God is in the details!

Paul went to be with Shelby at the hospital this morning. I needed to do laundry and realized I had no cash. I scrounged the bottom of my purse and found 2 quarters but I needed 4. I looked on the desk and found 1 Parkerhad laid last night so I went down to the laundry. I walked in and 4 quarters were laying there. See them?

As I am not getting paid on FMLA leave, I have tried not to fret about the loss of income, travel expenses, and medical bills. Today I awoke worried and God supplied exactly what was needed, reminding me of this verse: Philippians 4:19 And my God will meet all your needs according to the riches of his glory in Christ Jesus.
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‪#‎yesitwasonlyaquarter‬ ‪#‎godisinthedetails‬ ‪#‎needsmet‬ ‪#‎amazedandthankful‬
saras phone pics jan and feb 2015 637

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