Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Four Months Seizure Free!

on June 26, 2013

Next week marks the one year anniversary of our sweet baby’s hemispherectomy surgery. If you’ve been following the blog for any length of time, you know that the last year has been an absolute  roller coaster of ups and downs, dashed hopes and false peaks but finally, after a total of 5 surgeries (and several additional hospital stays), I am thrilled to report that Joscelyn is now four months seizure free! This is the longest our little girl has gone without a seizure since she was born!

Now 2 years old, Joscelyn enjoys many of the same activities that neurotypical children her age enjoy:

“Cooking” in her toy kitchen:

kitchen

Swinging on the swing at the playground:

playground

Splashing in the pool:

pool

Visiting the animals at the zoo:

zoo

And getting tickled by her daddy:

tickled

Physically, she is making great (albeit slow) progress in her various therapies. She “army crawls” everywhere, sits up by herself, stands independently for a few seconds at a time, walks with assistance and is beginning to “cruise” along the furniture unaided. Though still largely nonverbal, she is learning sign language and consistently signs “All done”, “More” and “Bye-bye”. She also nods her head “Yes” and “No”.

Mostly “no” ;) 

As for her right sided weakness from the hemispherectomy, she uses her right leg nearly as well and as often as her left leg but she is still reluctant to use her right hand (aka “Righty”) for many tasks. We continue to encourage her in occupational therapy to use it as a “helper hand”. 

People often ask us how long it will be until she begins using her right hand or walking independently or talking. The truth is, we really don’t know. We believe that given time and continuing therapy, she will continue to improve and that her brain will continue to find ways of rewiring itself and creating new pathways for learning.

Our hope is that she will walk, talk, sing and dance one day- but it will be in her own way and in her own time. 

We take such joy in Joss’ every accomplishment, no matter how large or small, but we don’t want her to be defined strictly by what she does or doesn’t do.

We want her to be appreciated for who she is

And who she is, is an amazing, precious, fiercely determined, inspiring little girl! 

Four months seizure free…and on her way to a great life! 

joscelyn

 

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12 responses to “Four Months Seizure Free!

  1. Steve Lowe says:

    It has always been my hope that she will walk and talk and dance and especially sing someday soon. I pray every day that this will happen. I believe with the help of her unbelievable mother and father and all of her therapists and all the prayers sent her way by many thousands of friends this will be the case. Joscelyn Dempsey, We all love you and pray for you every day.

  2. Gary Wayne says:

    Living a great life now!

  3. Beverly Lawler says:

    I am so happy for you. A step forward everyday!

  4. Patricia Ferguson says:

    Dear Jen: What a beautiful post, but we would never expect anything but wonderful from you. Joscelyn is as amazing as her parents and such a delight to her many followers through Joscelyn’s journey. I feel very honored to have had the priviledge of being one of the Warrior Princess’s admirers. She is in my constant prayers and hoping she continues to improve. All my love and best wishes and lots of hugs. Patricia Ferguson xoxoxo

  5. Lisa Melton says:

    Dear Jennifer,
    am so happy with every milestone I read about for Joss…. My wish for your daughter is that she will continue to develop happily, at her own comfortable pace….she is unique, God gave her a special job for such a tiny one…with every challenge you have shared, she has brought joy and inspiration to myslef, and the lives of countless people, making us all aware of the precious gift of life, how delicate it is, the changes in a blink of an eye…we really have no time to waste, to do much else but praise God for it and “Pay if Forward” . This is the lesson I am grateful to have gleaned from your soul to mine. Much Love….

  6. Kim says:

    Thank you for the update! I have been following sweet Joss every step of the way. I have prayed for her and you all year long. May God continue to bless your sweet family!

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