Molly

Molly was born on September 6, 2011, and made our little family complete.  She was a very easy going, happy baby with no health issues that we knew of. 

At Molly’s 4 month well visit, we mentioned to the pediatrician that Molly’s eyes were still crossing, and she didn’t have good head control.  The pediatrician told us to do more tummy time and see an ophthalmologist.  We took Molly to a local ophthalmologist who diagnosed her with Duane’s Syndrome and recommended strabismus surgery.  We decided to take Molly to see Dr. Hunter at Children’s Hospital Boston because he was the leading expert on Duane’s Syndrome.  Much to our surprise, he said Molly didn’t have Duane’s Syndrome… he thought she had Moebius Syndrome because her eyes didn’t move towards her ears at all, she had a weak smile, and she had low muscle tone.  He got us on the phone with Dr. Engle immediately to talk about Molly’s case.  She and Dr. Hunter recommended seeing a neurologist to confirm the diagnosis. 

I had no idea what Moebius Syndrome was, so I consulted “Dr. Google”.  As I read about Moebius, I was convinced that Dr. Hunter and Dr. Engle were completely crazy because Molly smiled all the time.  It just didn’t add up!  To make a very long story short, we took Molly to several specialists and after months of testing we had her diagnosis confirmed. 
Molly also has a severe case of hypotonia, which we are addressing through physical therapy, occupational therapy, and visual therapy.  I’m sure we’ll be adding speech therapy to the list soon.  At 16 months old Molly still cannot sit up or stand unassisted, but she’s making progress and getting stronger every day.  She is one determined little toddler, so we’re confident that she’ll be walking soon!

This has been an incredibly difficult journey, but we are hopeful for Molly’s future.  She’s a very bright, happy little girl.  We don’t take a single smile from her for granted because we know now what a miracle each smile is!
 
If you have any questions or need more information, please let me know.
 
Thanks,

Kim

Update 1/19/2014 Molly is 28 months old now and she continues to make great progress.  She is walking with the help of a gait trainer and she’s able to sit on her own.  Aside from her muscle weakness, she’s a typical two-year-old… tantrums and all!  Her Moebius certainly doesn’t hold her back!  She’s drinking from a straw now and she’s working hard to learn to talk.  She primarily uses sign language to communicate, and she knows over 20 signs!  We are so proud of how much Molly has accomplished this year and we look forward to seeing what she’ll accomplish in 2014!