Our next medical adventure...

So far, this blog has centered around our journey with MS.  We have another journey that we've lived with for 13 years and that's our journey in the world of Muscular Dystrophy.  In many ways, our journey with MD, has helped prepare us for our journey with MS.  Although they are two totally different diseases, in some ways, they look similar.  So I'm very thankful that doctors, specialists, wheelchairs, handicap accessibility knowledge, etc. were things we had already learned!  To be where we are today, with no prior knowledge would make this season a hundred times worse if we were having to educate ourselves at the same time!  I can't even imagine!

Our now 14 year old daughter was born totally healthy!  Or at least we thought!  But then as her friends began to develop in their motor skills, we began to see a difference in Chloe's abilities.  As I was gathering records just two weeks ago for an upcoming appt I was reminded in great detail of her accomplishments or lack of accomplishments as an infant.  Some of those that stuck out to me is Chloe didn't roll over until she was 8 months old. Many of her friends were crawling and she was just learning to roll over.  Chloe made no babbling sounds until she was a little over 10 months old.  But trust me, she caught up!  She has no problem saying words now!   She definitely wasn't walking when she turned a year old.  No where even close to walking!  She was just learning to sit up without falling over!  At 15 months old, she still wasn't eating food!  Her main source of nutrition was still from a bottle! So needless to say our early days with Chloe were full of physical, occupational and speech therapy.

At 15 months old, she was sent to Atlanta, GA where she saw a specialist in Mitochondrial Disorders.  As a result of that doctors appt, followed by a muscle biopsy, we eventually received her diagnosis of being a Manifesting Carrier of Duchenne Muscular Dystrophy.  That, in itself, is a very rare diagnosis.  DMD is a boy's disease as it is an X-linked disease.  A female has two X's so if one X is flawed, typically the good X will be the working X!    However, research has now proven that it does indeed affect girls.

Being a Manifesting Carrier, no one has ever had any insight into what Chloe's progression would look like.  Today she struggles immensely with muscle spasms!  She takes a muscle relaxant to help loosen her muscles and help with the pain.  If I took as much as she takes, I would not emerge from the bed for a week or more just with one dose!  But...it keeps her going!  She still walks short distances.  She has issues with picking up heavy items such as a gallon jug.  Pouring from a full gallon is very difficult and at times impossible.  She struggles with muscle fatigue so things like washing her hair is very difficult for her where she has to hold her arms up for awhile so I wash her hair.  We have figured a way she can now dry her own hair! Which gives her some independence.  Then I typically come back and straighten her hair.  She tires exceptionally easy so therefore uses a wheelchair to aide in the fatigue level.  She has muscle pain all the time.  Some days, the pain is so bad, she struggles to move around.  Other days, she puts her determined spirit into action and does whatever it is she desires to do.  And anyone that knows her can say, she's not only determined she has a fighting spirit!  We love that about her...most days!!

Two years ago, she was diagnosed with a movement disorder.  To our knowledge, a movement disorder and muscular dystrophy are not connected.  A year ago, she was also treated for the second time for depression.  The past year and half has been a battle to get her medicines regulated and able to get her on a more stable ground emotionally.  But we have definitely made progress!

Today, we are preparing to travel to Nationwide Children's Hospital in Columbus, Ohio.  There she will see a specialist in Duchenne Muscular Dystrophy.  He is quite the famous doctor to say the least.  I read about him all the time in the MDA's Quest Magazine.  We fly on Tuesday morning into Columbus, OH.  The goal of this trip is to see if there are new things out there that we should try, to see if he can give any prognosis for how this disease will progress, and to obtain some guidance on the drugs she is now taking and what we need to do in the future.  Our next medical adventure awaits us there...

I have said before, music speaks to my heart all the time!! I have a friend who sends me songs to listen to as she knows it's a way to my heart!  She sent me this song and it has captivated my heart right now.  And it is so true for where I am.  I must learn to stop holding on and just be held!  Just wanted to share!

Just Be Held by Casting Crowns