New Hope

I haven't posted here in some time.  I have found it difficult to reflect on the hardship of Bekah's early months in the face of an uncertain future.  I have been pining for some sort of developmental milestone that might shed some light on how life will be for her.  I haven't been optimistic.  Many medical professionals have told us to be prepared for a wheelchair.  Geneticists have told us not to hope for a cure and Bekah's physical therapist has shared concern that she will never be able to sit unassisted.

After her tracheostomy, she became completely floppy and unable to move.  She was like a wet noodle, completely limp.  She has had several neurological exams and diagnostic tests, but the answer alludes us all.  During one of her hospital stays, Bekah's neurologist tested her for myasthenia gravis.  This is an auto-immune disease that is treated with medication.  The test is performed by administering the medication and the results are instantaneous.  If the patient has the condition, the medication will make voluntary movement possible.  The following video was taken the day before the test.  In this clip, she is playing, using all of her strength to move.

Bekah does not have myasthenia gravis.  She was still unable to move.

She has been home most of the time since December 31, 2013.  She has therapy five days a week.  Occupational therapy and physical therapy come twice a week each and she has play therapy once a week.  Her major breakthrough occurred at 6 months of age when she began to eat pureed food.  She started with avocado and is now eating lamb and sausage, curry, and all kinds of delicious table foods.

Since then, there has been little progress and many many set backs until just recently.  Something remarkable happened and for the first time I know Bekah is going to okay.  Here's the video.

 It may not look like much, but what you're seeing is Bekah making coordinated movements to spin the wheel.  Jeffrey is supporting her wrist to alleviate the weight of her arm so she can use what little strength she has to make the movement.   As her fingers reach the wheel, she attempts to wrap her fingers around it.  She hasn't been able to grasp or use her fingers at all since before her tracheostomy.  This is a huge development.  She still isn't strong enough to move without support but she understands how to use her muscles and has gained enough strength to begin to grasp.  This is the first time I have ever had true hope that she will have quality of life.  If this is a trend that continues and her strength increases, she can do almost anything!