February 18, 2013


Proudly presenting the newest graduate from Occupational Therapy: Ashlyn Hope!!

What does this mean??  Ashlyn has completed her goals for occupational therapy: her sensory processing has improved, her feeding issues have improved, her fine motor skills are great, and her difficulty "moving through space" has improved.  Awesome!!

What this also means: We do not need to go back to the Children's Hospital for the neurologist, the developmental specialist, the physical therapist, or the occupational therapist!!  Whoa!!  Ashlyn has made major strides (pun intended)!!  She just learned to walk one year ago (at almost 20 months).

We said our good-byes to the therapists, the receptionists, and many others that we have made friends with over the past year or so.  It was a little bitter/sweet as we walked out those doors for the last time.

So, so, so proud of Ashlyn!

Up next: in a few weeks we have Ashlyn's one year post-op appointment with the neurosurgeon at Duke.

February 6, 2013

One Year Since Life Changing MRI

One year ago we heard the words Chiari Malformation for the first time.  One year ago our lives changed forever with those two words.

Our youngest daughter Ashlyn Hope, was 19 months old and she went in for a MRI due to some developmental delays and favoring of one side of her body.  We were thinking that MAYBE she had a stroke or brain hemorrhage when she was born, but we were shocked to find out differently.

I will always remember the moment I received the phone call from the doctor with the devastating news about Ashlyn.  I was at work and I ran to the office so I could hear the nurse as she spoke.  Tears rolled down my face as I didn't know exactly what the words Chiari Malformation meant other than my daughter had a malformation in her brain and she was being referred to a neurologist and a neurosurgeon.  I remember trying to take notes with my shaky hand as the nurse spelled out Chiari Malformation.  I also spelled out INCURABLE.  I remember trying to phone my husband and explain between sobs the results of Ashlyn's MRI.  I remember calling our families with the devastating news.  I remember coming home to see tears streaming down my husband's face.

Since this day, we have spent many hours at doctor's offices, at various appointments, at more MRI's, physical therapy sessions, occupational therapy sessions, and of course brain surgery.  We have spent many hours in prayer.  We have spent many hours crying.  We have spent countless hours rejoicing.

Ashlyn continues to be our little miracle as she fights this incurable brain malformation.  She is doing AMAZING and no one would ever be able to guess that she had brain surgery.  She continues to grow and develop and amaze us with her contagious laughter and personality.  She is happy and full of HOPE!

One year ago: