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:
Swinging on the swing at the playground:
Splashing in the pool:
Visiting the animals at the zoo:
And getting tickled by her daddy:
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!