Baby Steps

Today is a wonderful day to start our official blog about Emily’s Perinatal Stroke recovery, (tears of joy already starting to flow). Until now,  I have not been ready to share our story in public.  I haven’t been ready to become unarmed.  Why?  Because,  as Glennon Melton said in her recent interview on The Talk,  “The unarmed warrior is someone who comes out of her hiding place and invites other people in to her imperfect life and she is someone who knows she is good enough just as she is and she refuses to live in shame.   And because she is unarmed, she does takes some hits, for sure.”   I am finally ready to use those hits to grow.  Now don’t get me wrong, during this journey I have received MUCH love and support.  I have been incredibly amazed at the out pouring of love for my precious daughter and family during this health crisis.  But why do those few exceptions stick in your mind so clearly?  At this point,  I choose to focus on my daughter’s incredible ability to make people smile and my talent for bringing a wealth of pertinent information to those that need it.   And so I begin to chronicle our journey from the day we were told that Emily wouldn’t make it through the night to the time when we will kiss her goodbye as she leaves to live on her own somewhere, somehow.

If you know nothing about Emily, she has had 2 perinatal strokes and has been quite affected.  She was diagnosed with quadriplegic cerebral palsy at 12 months old and has significant low muscle tone in her trunk as well as some spasticity in her arms and legs.  At 17 months,  she is still unable to hold her head up 100% of the time.  BUT today,  I celebrate because she took steps. YES!   Steps.  Not in the the 12 months old baby’s first steps kind of way, mind you.  Her strokes have wiped out most of her primitive reflexes.  One of those reflexes is the “steps” a newborn will take as you hold them up over a hard surface.  Part of every newborn exam.  Emily did this when she was minutes old.  After her second stroke she did not.  We have been working hard to re-pattern these many reflexes through the Masgutova Neurostructural Reflex Integration program, as all the reflexes are vital in allowing a baby to learn voluntary movement.   At our recent assessment with Dr. Masgutova,  we learned that Emily’s reflexes are improving.  But,  we did not assess this Thomas Automatic Gait reflex.  It was too soon in her recovery. We have also recently added a new type of physical therapy called Medek Exercises.  Essentially, theses exercises position the child in certain ways in order to use gravity to provoke the brain to respond and right the body.   I was doing her supported weight bearing Medek exercise today when  I screamed to the family to “come quick, Emily is standing!!” and all of a sudden she began to take supported steps forward.  Four steps to be exact.  Tears and hugging ensued.   It seems this reflex has reappeared.  HUGE.  Little inch-stones like this one are happening faster these days.  I am really ready to share with you all how were are getting her there!  Love to all and thank you for your support!

7 thoughts on “Baby Steps

  1. Sarah-

    Emily sounds like an amazing girl! What a wonderful day it must have been! She is so lucky to have you as her mom! Your strength and laughter will no doubt make the toughest days easier. Sending love to you all! I’m sure it took a lot of bravery to start this blog and make your family’s journey public. I for one am glad you did.

  2. We are so excited to be able to keep up with Emily’s news from afar! You and Steve are an inspiration and the best parents and advocates Emily could wish for. She is such a beautiful little lady!

  3. i am so proud of you and emily and your entire family for being visions of bravery, strength and compassion. sarah, you are one of my most favorite people in the world. i love you dearly and i am so glad you started this new venture… smiles, hugs, laughter and as i always say BUXTON BABIES ROCK

  4. I envy your strength and appreciate your willingness to share. Thinking of you all often. Big hugs from TX. xoxox

  5. Thank you for sharing Emily’s journey. She is an inspiration to us all. You are truly an amazing family.

  6. Steve and Sarah — what a cool site. Thanks for putting it up. I pray for blessings for you and the children.

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