Oh, how I am Ohio overwhelmed right now!  Our plans are not all nice and tidy but roll-with-the-flow plans.  The past two days I have spent like a crazy woman trying to get things done.

• Meal planning for gluten-free meals while away.  Gluten-free is a new introduction to our Ohio trip. Definitely makes things a bit more difficult.
• Pick up medical records from the gastroenterologist
• Pick up medical records from the urologist
• Oil Changed
• Tire Checked Out
• Totally out of makeup; to store to get that
• Totally out of Chloe’s shampoo; to store to get that
• Dog out of medicine; to vet to pick up more
• Prescriptions checked out for who needs what and two trips to the pharmacy
• Last roll of toilet paper; to store for TP run (at least I didn’t wait until we were completely out)
• Loads upon loads of laundry

A crazy migraine

I told you I had been running like a crazy woman in preparations.  Not only have I been running like crazy, but Chloe has been battling a migraine like crazy.  For 14 straight days, this child has had a migraine.  The migraine has not escalated to ER level, but it is keeping her from being the least bit productive.  We continue to treat the migraine with a sundry of migraine medications that keep her somewhat comfortable, but she’s not up and going.

I just knew for sure on Thursday we would end up in the ER, but I was wrong.  Her headache did not escalate as I suspected.  It is tricking me this time.  With the upcoming trip, it has made it hard to know for sure what to do for her.  Yes, I am going to Nationwide Children’s Hospital so I know I have medical resources.  However, locally they know how to treat Chloe’s migraines.  In Ohio, I don’t know what kind of protocol we would have to go through.  I’ve prayed for her migraine to go away but it hasn’t.  I’ve prayed if she needs a trip to the ER before we leave that her head would become unbearable, but it hasn’t.  God continues to show me that despite how much I like to plan and be in control, I must simply trust Him in this place.  I have no control over this headache!

Zine’s parents are coming here Sunday.

With Conner in the midst of finals and Zine at the place that I don’t feel comfortable leaving him for long periods of time alone, I asked Zine’s parents to hang with him this week.  Now, it has turned into them hanging with Zine and keeping Krisann.  We shall see how this goes.  I’m more than a bit apprehensive about leaving Krisann here.  Zine and Krisann’s anxiety often feeds off of one another, and it is not always a good thing.  Therefore, we all need to pray that Krisann has a fantastic week.  Zine’s parents will be driving here on Sunday, so please pray for them as they travel.  As my mother-in-law reminded me this morning, no matter how the trip goes, it is still a long way!

Ohio Plans

Chloe and I have discussed at great length whether we were going to drive part of the way Sunday and the rest on Monday.  However, with her feeling terrible, we have decided that we will travel all in one day.  She and I will be driving all day on Monday.  I hope to leave early enough not to hit 5:00 traffic in Cincinnati!  Zine says, “I’ve never known you to get out of this house very early.”  (There is truth to what he says!)   However, now I am out to prove that I can leave early!

Tuesday’s Plan

Due to Chloe’s health complications over the past year, we will be seeing a couple of new doctors and having some new procedures done.  On Tuesday, she will see an endocronologist.  I’m sure tests will be ordered by this doctor, so I’m grateful that we see this doctor first.  I’m very hopeful that there will be some direction as well.

Wednesday’s Crazy Plan

Wednesday, we have so much in one day I don’t even know how it’s all going to work out.  She will go to MDA clinic where she sees a neurologist, pulmonologist, cardiologist, respiratory therapists, occupational therapist, physical therapist, social worker, etc.  Sometimes in this process, there are other doctors thrown in there like nutritionists or geneticists.  We never know for sure who all we will see.  Chloe will also have a cardiac MRI to evaluate if she has had further heart deteroiration on Wednesday.

And if that’s not enough, she will see a brand new doctor, a urologist.  Oh, how we hope this urologist has different insight than what we know right now.  I find myself crossing my fingers for this appointment, as I was not too happy about what we learned recently.  To finish off Wednesday, Chloe is scheduled for a sleep study that night.  They can monitor things there as it relates to muscular dystrophy that they can’t track here in Huntsville.  Do you think that is enough for one day?  Oh, my.  I don’t know how she’s going to hold up to all of that!  It’s going to be one long day.  We don’t need a migraine to rear its ugly head on this day for sure!

Thursday’s Partial Plan

Thursday brings appointment with her pain doctor as she has been having a good bit of breakthrough pain.  The last time we saw him, he was able to help Chloe, so I’m hoping he has good insight again this time as well.  Thursday and Friday are reserved for any tests that these doctors would like to order.

Our Return

Who knows?  It might be Friday, Saturday or Sunday.  We simply get to wait and see how she and I feel and if further tests are ordered.

I am not in control!!!

Unfortunately, I like to have definite plans and to be in control.  I have also passed that trait on to Chloe.  So for both of us, this trip is bringing some anxiety because there are new tests and new doctors.

Top that uncertainty off with my level of anxiety about leaving Zine and Krisann here, and it leaves an unsettled heart.

“Life is much different for me.”

Krisann painted this picture one day.  It is hanging on her wall.  It brings tears to my eyes everytime I stop and look at it.  This painting speaks our deep feelings in such a simple way.  The past three days, I have felt this sentiment radiate in my heart many times. Chloe sits at my feet with her head leaned over in my lap, and this same thought is resonating in her. “I wish I didn’t have muscular dystrophy.”  “I’m afraid.”  My only response, “Me too, sweet girl.”

These are some things I am trying to focus my mind and heart on!