We are home!  Yoohoo!!

We finished all the tests the doctors had ordered Friday morning, and then we headed out!  We left Columbus about 12:45 yesterday.  And I drove hard and fast.  I am not a big speeder!  However, I do flow with traffic in the fast lane on long trips.  So across Kentucky, can I just say traffic flowed quickly?  Therefore, I flowed quickly!  Now for the interstate between Columbus and Cincinnati, I don’t think I’ve driven on a more bumpy interstate in my life, and I drive the Memphis to Dallas interstates often. Whew!  The two do not compare!  Chloe slept four of the eight hours on the way home.

Running the air conditioner, caused water to leak into the floor of my vehicle.  There must be a hose that is leaking.  The majority of the way home, I would turn the air on and off, on and off.  When it would start flowing heavy, I would turn the ac off.  When I got hot, I would turn the air on.  Then in Kentucky, I talked to Zine about it, and we decided after some investigation that it wasn’t anything that was going to cause issues, so I let the air run continuously and watched the water come inside the vehicle periodically.

Fast forward…as I was nearing the Tennessee border, my check engine light came on.  Once again, I call Zine trying not to panic but just be super calm.  However, on the inside, I might have been stressing a little.  It’s dark, I’m in the middle of nowhere, my car is leaking water inside, and now my check engine light is going off.

I decide at the next exit I will stop and check the fluids in the vehicle.  And then I realized the next stop other than Ardmore would be Athens.  Ahhh, with Chloe’s research, we discover there is an O’Reilly Auto Parts store not far off the interstate and if God blesses us, we will make it by the skin of our teeth before they close.  God blessed us!  We pulled in right before they locked the doors!  I won’t say they were glad to see us, but they weren’t rude!

My vehicle is not in their computer system.  Go figure.  Although they pulled up two computer codes, they could not tell me for sure what was wrong.  They assured me the water coming in my vehicle was not related to my check engine light.  They did some research and decided it might be a sensor.  I checked my fluids while they were researching and then I had them double check them for me as well.  They felt it was safe for me to drive home since I was close.  I just booked us right on home after that little adventure.  Yes, it was a little adventure, but since it was after dark, it felt like a much bigger adventure.

Everything is scarier in the dark!

Chloe and I were glad to pull into our driveway and be home!

It has indeed been a long week.  Thank you for praying for us while we were away.  Chloe was pretty sick most of the time we were gone.  Therefore, there wasn’t much fun and playing going on with us.  However, we did share some laughs together.  I shared the light video in my previous post!  We also had another funny that we shared.

Sometimes automated toilets are very confused.

We discovered a toilet, and as soon as I went to sit down, it flushed.  So I moved until it was done.  However, I think the entire time I used that crazy commode, it flushed no less than four or five times.  Chloe though thought it was quite funny.  I issued the challenge to see if she was able to use the crazy commode and it flushes less than it did on me.  She may have been one flush less. However, she had been warned not to breathe or move while she went!  I left wondering if that commode flushes by itself throughout the day!  🙂

I am convinced that these things don’t happen by coincidence.

[bctt tweet=”God uses each and every moment in our lives to accomplish His purposes.  ” username=”kksmith8694″]

I believe that God brings smiles and laughs along the way to encourage our hearts.  I think when I am in stressful times like this week, I am more open to seeing His work than I am when I am stuck in the middle of mundane.

Chloe is the most tender-hearted compassionate girl ever!  She has such a huge heart and this week, even in the middle of her own difficult week.  I saw her reach out to another teenager at the Ronald McDonald house one evening at dinner.  She interacted with kids multiple times throughout the week in various waiting rooms.  My favorite interaction involved her and a 9-year-old down syndrome boy.  Chloe understands feeling bad and being different.  However, God is using it in her life to give her a heart of compassion for others in difficult places.  I don’t know what God is going to do with this girl of mine, but this week, I think I gained a glimpse of a possibility.

The reality is Chloe will most likely never go to college full time.  She will never hold a full-time job unless God does some miraculous healing in her life.  But God just made it very clear to me that although her future looks different, He has big plans to use her in the lives of others.  God just told me to watch Him work in her life.  In her own way, Chloe is going to use her art to reach people in difficult places.  She may never make a living for herself doing this, but she is going to have a lasting impact in the lives of those God places in her path.  I am grateful for these whispers from Jesus this week.

Oh, how I love whispers from Jesus in my ears!

Y’all here is the reality of our lives.  Chloe has a muscular dystrophy type that girls typically don’t have.  According to the world expert in this disease, Chloe is unique.  In 2007, she was the focus of an article in the MDA’s quest magazine, discussing the way in which girls inherited the disease.  In another article about girls and DMD, Eric Hoffman talks about a race of time.  He explains why when the race for repairs is lost, carriers don’t get better; they get worse.  Thankfully, Chloe has rocked along several years with the help of prednisone with no slowing down.  However, it appears that her muscle disease is beginning to slowly progress even with prednisone.  Some blood work revealed a muscle enzyme had risen 4,000 points since the last time they checked it.   She has heart issues as it relates to muscular dystrophy.  And now they are saying she has some urinary tract issues that are caused by muscular dystrophy as well.

Dr. Mendell is currently conducting a research study of carriers of DMD, and Chloe is unique he said this trip.  Chloe still has the muscle strength needed to walk and function. However, she is severely limited by fatigue and other health issues caused by muscular dystrophy.  Chloe also has some markers that point to some type of inflammatory disease going on, but at this time, they have been unable to label that.  I think this is one of the reasons they want to reassess with a muscle biopsy.  As Dr. Mendell communicated, I want to make sure we haven’t missed something, not to mention I am interested in this case from a medical researcher perspective as well.

Basically, we left Ohio with a new understanding that many of the things we want to fix, just cannot be fixed.

They are a direct result of the progress of her muscle disease.  What does the progression look like?  No one can tell us.  However, in Chloe’s body, it seems the race is slowing down, and the muscles regeneration is being overrun by muscle fibers that don’t regenerate.

We are still waiting on some tests results.  There will be many discussions in the coming days with Ohio doctors and Huntsville doctors.  We are still waiting to know if Chloe is going to have to move from a CPAP machine to a bi-pap machine.  We are still waiting on some test results with the endocrinologist.  There are still conversations to be had regarding the significant increase in her muscle enzyme testing.  A decision has to be made whether we will repeat the muscle biopsy or not.  What is going to happen as we wean Chloe off prednisone in the coming months?  Details are to be arranged and discussed as it relates to a baclofen pump.

So as you can see, many things are still in the workings.  There are some hopeful things in all this mess though.  Will a baclofen pump help with Chloe’s fatigue?  Is it possible some hormonal issues are triggering migraines?  Will a change in sleep machines improve the headaches and the fatigue?  Although reality was faced this week, hope exists right alonside those difficult realities.

Although we are home, many medical things are still going on!

In the meantime, we return to life.  It is Cinco de Mayo so there is a Mexican feast going on here at this house tonight.  (Nevermind the fact, Mexican is easy to cook!)  Next week, we return to school and hopefully, Chloe feels like returning to her work at the art studio.  If you are looking for a great art studio, we are partial to Artistic Minds. All the appointments I moved to clear our schedule last week, well, they are surfacing on the calendar this week.  Life goes on, we just add these medical discussions and decisions in the midst of life.

Thank you for your prayers this week, and we continue to cherish your prayers in the weeks to come as we navigate through these medical issues and the emotions that come alongside the reality you have a muscle disease that is progressing.