Here we are. Evelyn is now one year post-op and has been living spasticity free for 365 days! Woohoo!!

Exactly a year ago she was having Selective Dorsal Rhizotomy surgery at St. Louis Children’s Hospital with the amazing Dr. TS Park!!  It was and continues to be a life changing moment in our lives!

Leading up to SDR I was feeling so many emotions – anxious, excited, worried, happy, blessed, nervous, grateful and SCARED!  So SCARED! Scared about the procedure.  Scared about the future. Scared she would be scared.  Once we got to St. Louis and finally met Dr. Park, I can honestly say so many of those negative emotions practically disappeared.  The weeks leading up to our trip I was convinced I wouldn’t be able to sleep a wink the night before.  The idea of handing my daughter over to a stranger who was going to perform neurosurgery on her was crazy BUT I actually slept.  After meeting Dr. Park and the team I knew it was the best decision for Evie.  They made us feel comfortable, were kind and made us hopeful for the future!

 

At 8:30am on March 7, 2018, Evie was wheeled into the OR and for the last year she has worked incredibly hard at strengthening her “new” body with hundreds of hours of physiotherapy, occupational therapy sessions, Conductive Education, personal training, swimming and so many other activities.  Her movements are more fluid, her comfort level has improved, her flexibility has increased, her self care skills have grown and she has gained new abilities such as RUNNING!

This week Evelyn did a skill review with one of her therapists to see how far she has come since last April.  One of our goals at the time was being able to run 10 feet.   Even our therapist admitted she wasn’t sure about this 11 months ago.  I think it is safe to say she can run now!  Here is a short clip of her running at her personal training session this week.  Keep in mind this is probably her 7th or 8th time running from wall to wall.

So happy and proud of her!

I have reached out to Dr. Park’s team to discuss next steps and see what we should be focusing on now that we are entering the second year of her rehab.  Evelyn has built up her strength since last year and one area we would like to focus on is her gait pattern.  We felt the Bioness machine did help with her gait pattern, however we weren’t able to fully try it out the week we had it.  Luckily, they have agreed to let us try it again in the spring when we can fully take advantage of it,  we just need this snow to go away so we can walk to the park!  Below is a short video of her walking with the system on.

 

Cerebral Palsy will always be part of our lives.  As a parent, some days I really hate CP and stress and struggle because of it.  With every growth spurt comes challenges and even day to day stuff can be hard for Evie but SDR has changed her life for the better and it was the best decision we could have made for her.  SDR has and continues to allow our warrior the ability to do so many things.  She is able to participate in activities at school, play with her brother and friends, try new things, feel more comfortable and BE INDEPENDENT!

Now to get sappy…

I am forever grateful for everyone’s support during this incredible journey.  We have met so many other  CP families from around the world and locally and many are on their own SDR journey now (so excited for you all).  We have formed bonds and friendships and I know I can message any of those Warrior Mammas (and Dads) and ask a question or vent about something and they get it and support me 100%.  I am so thankful for all of those who donated to our cause, sent notes of support, came to our events, shared our story and follow our journey!  Thank you to all those who helped Evie prepare for her surgery and have been an important part of her rehab!  Thank you so much to our amazing families and friends for everything they have and continue to do for us!  Thank you to Dr. Park and his team for helping thousands of people, including our Evie, live a spasticity free life!  THANK YOU!!

Lastly, thank you to Evelyn.  Thank you for showing me what real strength is.  You are a strong.  You are brave.  You are determined.  You preserver.  You are amazing.  You are loved.  We are so proud of you and all you have accomplished.  We know you will continue to grow in so many ways and we can not wait to see where your journey takes you!

Happy 1 Year SDR Anniversary to our beautiful warrior!