Finally…an update

Finally, I have a moment for an update.  Thank you so much for your prayers!

We have had a productive week to say the least.  It has been busy and full.

Tuesday Update

On Tuesday, we met with an endocrinologist for the first time.  Chloe and I left feeling bad for the doctor!  We discussed the extreme fatigue which is a significant concern.  After discussing at great lengths, she said, “The easy answer is for you to have hypothyroidism.  However, I don’t think that’s what we are dealing with.”  She went on to list about four or five things that cause fatigue.  If you put all those factors together, you are likely to have someone like Chloe who can’t function and stays exhausted.  The doctor was so sweet though.  She communicated how much she wished it was an easy answer but felt as if it was a result of several things that can’t be fixed.  She did order some labwork which we don’t have results from yet.  There are some things in the endocrinology world that is a little off, so they are exploring those through lab work. You can read more about Tuesday here.

Wednesday Update

I can’t even paint a picture of precisely what Wednesday looked like in writing.  It would take too long.  So I will try to give a short snippet.

Chloe had a cardiac MRI which showed the heart medicine was working and she has no further scar tissue build up around her heart.  That was positive!

Chloe had pulmonary function tests which revealed regression since she had them done last.  She is still good but a definite decline from last time.  Due to the decrease in her pulmonary function, a pneumonia vaccine was given for safety precautions.  Chloe also endures a plethora of testing here to see how her muscular dystrophy is affecting her gross motor skills.  Those too indicated a decline in her abilities.  Also, they want to start splinting her legs and feet as her calf muscles are getting very tight.  All of these things indicate the disease has progressed.

Are we missing something?  The doctor in DMD is completely mesmerized by Chloe.  They all call Chloe unique.  He has ordered some more genetic testing to be done.  He wants us to consider having another muscle biopsy done.  We are thinking about that.  We are not doing it this trip!  Chloe has been taking steroids for three years now.  They have puffed up her face and caused her to gain some weight for sure.  They did help her the past three years.  However, we have decided to see if we can gradually take her off of that drug for several reasons.  There is much uncertainty as to how she is going to respond when we do.  We will proceed very slowly with this decision and know full well, that we might not be able to.  This drug likely may be what is keeping her going and when we start reducing it, her ability to function may decline even further.  If that is the case, then we have hard decisions to make for sure.  We are committing this into God’s hands and trusting Him in this process to guide and direct.

Chloe also met with a urologist.  We spent a good bit of time here as well.  They were a breath of fresh air at the end of a long day.  It has become evident over the past few months that there are some issues with her bladder/kidneys.  Tomorrow she will be having two different imaging studies done to evaluate what might be going on.  We are praying for great wisdom in this process as well.  Kidneys are quite crucial to your wellbeing!  We are grateful for the knowledge these doctors brought to the table yesterday. However, it was a VERY long day.

We finished our day by spending the night in the main hospital.  That was a new experience.  They have top-notch security around here.  I teased that there was nothing like a hospital to remind you that you’re a real parent.  I remember the first night I spent with my son in the hospital and I remember thinking wow I must really be a parent now!  LOL!  So that feeling was reiterated again last night.

Circumstances like these give me parent power!!  For real, I’ve done things that I never expected I would do!  And God’s grace is sufficient every time.  That doesn’t mean our emotions don’t get on edge or that we don’t get discouraged at times…trust me we do!  This…just yesterday…tons of discouragement depicted in this picture right here!

Last night we did have a good laugh in the hospital room.  We turned the lights off to go to sleep, and there was this beautiful lighting behind the bed that Chloe discovered changed colors.   She had played and played with the light and could not figure out how to turn it off.  So I told her to wait, and a nurse would be by, and we would ask.  Then I decided to video the light.  It was beautiful!  And then just wait…you’ll have to watch the video.  We did not plan this.  This happened in real time.  Take a watch of our 30-second video that ended up with us laughing for a little bit.  Sometimes in stressful situations, it doesn’t take much to bring humor into your lives!  I think God does that for us as well!  This video doesn’t have good sound so listen carefully.  I was in a hospital, and there were security guards, so I tried to be as quiet as possible!

Enjoy this video!


Wednesday Night Update

Wednesday night they were monitoring Chloe for her oxygen levels and carbon dioxide levels.  It is common for kids with muscular dystrophy for the ratio of each to be off.  We breathe in oxygen and exhale carbon dioxide.  However, in MD kids they can breathe in oxygen but not exhale enough carbon dioxide.  And if that happens, it’s hard on the heart, but it can cause extreme fatigue and headaches. So they felt it necessary to check this out.  We do not have the results of this test yet.  It will be about 14 days before we hear back from it.  Chloe woke up at 4 am with tremendous leg pain.  So they let us leave early.  We returned to our room at the Ronald McDonald House and tried to get her pain under control.  It was about 7:30 before she settled down.  At 8:00 it was time to get ready for another day.  No rest for the weary.

Thursday Update

Thursday we had a lengthy discussion about how to handle the pain that she has been experiencing.  After much discussion, it was determined that it was time to up her baclofen.  Which means for her to function, a baclofen pump is in order.  We’ve known this was coming for quite some time but have tried to put off for as long as possible.  However, it seems the time has drawn near.  We do want to do that in Huntsville as it takes quite a good bit of upkeep.  We will begin that process with our neurologist in few weeks.

This afternoon, we finally had some time to rest.  However, Chloe has not felt well at all!

Tomorrow, she has some further testing done at 11 am and then we will be done unless those show something that could be an emergency type situation.  We aren’t expecting that to be the case.  So a little after lunchtime we will have completed our appointments here.  If we are up to it, we will begin our journey home.  I don’t know that we will make it all the way, but you can better guess, we will be caught trying!!  Thank you for your prayers this week.  I do have some fantastic friends and prayer warriors!  So very grateful for each of you.  Once again, this post has terrible grammar, punctuation, etc.  Don’t judge me.  You get an unedited version!








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.

This Post Has One Comment

  1. Renee

    Love the video. I’m guessing that is a nightlight but some kids (and their parents) need DARK for sleeping especially during a sleep study. Glad you found the right button

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