Ohio Results

We have been coming here for one year now.  We have a world renowned doctor in muscular dystrophy.  With numerous medicine changes over the past year we have helped Chloe feel better!  Her pain is much more controlled.  For years this child has lived in pain.  And to hear her say she doesn’t have pain at times is an amazing gift!

However, in the past three months I have seen her fatigue level increase.  She seems tired a lot!  I thought it might be because she was more active since she felt better.  I have wondered if it literally was mind over matter.  Chloe wants to be normal and Chloe has always been stubborn so is she just sucking it up and moving forward?  This is the child that when she was little you could explain to her if she did something it would be disobeying and she would get a spanking…so we would say…do you want to obey or disobey?  Her response…I want to disobey!  Stubborn child!!  🙂   I have also wondered if her fatigue level was emotional related.  We have had a ton of stuff going on in our family the past few months.  We have discussed that possibility with counselor and psychiatrist as well.  But once again, no one has really known for sure what was causing it.  Some days, she can get up and two hours later be sound asleep on the sofa or in her bed.  Some people have just said she is a teenager you know!  But my heart has been a bit concerned.

We travelled here on Monday evening.  On Tuesday, she had some big cardiac testing done.  And today we have spent with doctors and therapists.  Let’s see…neuromuscular doctor, cardiologist, physical therapist, occupational therapist…the list goes on!  You can see a lot of medical people here in one day!  Thursday we will begin our journey home!

We learned a couple of things today.  Her skeletal muscles are stronger due to the meds they have had her on.  Thus she hasn’t used her chair as much lately.  It is obvious that Dr. M has researched a lot exactly what to do for Chloe!  He educates us more each time we come!  I knew when he was in our room today he had some concerns about Chloe’s heart.  He had not seen her results from yesterday but made it very clear that for carriers of DMD, the heart was a major issue and definitely wondered if the fatigue was heart related.  He said I will be interested to know what those tests show.  Thats the game changer for you he said!   And….what we learned…the game did change!  The cardiologist came and explained to us that in DMD manifesting carriers, what they start seeing in their teenage years is scar tissue start developing around the heart.  Their heart just has to work so much harder and the disease seems to really affect the Manifesting Carriers hearts across the board.  And that is exactly what Chloe’s heart has done.  It has developed some scar tissue around it.  And it will continue to develop more and more as the disease works in her body.   So what do you do for it…

If I understand correctly there is no fix for it.  But…they are starting her on heart medicine that will help her heart not work as hard so that hopefully by doing that, it will slow the scar tissue build up!  The cardiologist did a fantastic job at relaying this information to Chloe.  Dr. C didn’t make Chloe feel like there was another thing wrong with her.  She kept telling her she was doing great.  And we were just going to take some more medicine to add to her already handful of pills!  We will start low and we will increase it in six months.  In another year, they will do these cardiac tests again and will compare.  A year ago, she had no scar tissue.  But I can’t begin to explain how absolutely wonderful the doctor was.  I really, really like Dr. C.  They did do an EKG today and they have Chloe on a heart monitor until we leave in the morning!  So they are really checking her heart out well!

So now we have answers as to why Chloe has begun to nap a lot more.  Her heart is just working so hard!!  She didn’t really respond emotionally at all. But the doctor was very matter of fact and non emotional which was good!  And we have kept busy this evening crafting away.  Fun with Fran happens here once a week and we love her craft projects she brings each week!  But just a few minutes ago, Chloe said something which let me know she was thinking about what all she heard and it was beginning to sink in.

And we finally went inside the princess room this week!  Totally enjoyed our time in the princess room.  I made the girls laugh.  Krisann finally said my tummy hurts from laughing so hard.  And it was all of a sudden that I realized that Krisann hasn’t really laughed hard in a long time!  I told her she needed to do that more often!

 And the night would not be complete without sharing Krisann’s rendition of me!  Zine said the only thing wrong with it was he had NEVER known me to wear heels!

We are supposed to fly out of here at 10:23 in the morning which is 9:23 CT.   So we will have to get up and get going in the morning!  Please pray that we would not have any delays and that our layover time would pass quickly!  And pray for the girls.  After our flight here….I might have some uncertainties.  Still don’t know why Chloe just lost it emotionally on the plane.  And definitely don’t understand Krisann being afraid!

Zine has appt in Cullman on Friday morning!  So you can pray for that as well.  I’m ready to be back home with my hubby!  I haven’t enjoyed being away from him.  But am grateful for Conner who has been filling in for me and taking good care of his dad!  Zine even went to science class with Conner this week in my absence!  So they have had some dad and son bonding time to say the least!


Wife of 20+ years. Mom to 3 children. Love sharing my life with weary hearts so that we can know the One who is Good, who is in Control, and Whose strength is made perfect in our weaknesses.

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  1. Renee

    Continued prayers for your overflowing plate

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