At long last...

March 19, 2019

Hi Everyone,

 

Today I have a special update to share. 

 

The last 3 months have been full to the brim! Full of work and everyday demands. Full of physical therapy appointments. Full of ups and downs as I struggled more than ever to maintain my mobility in this particularly tough winter (even by Canadian standards!). And...it's also been full of time spent managing existing and new pain in my feet, while spasticity has continued to take its frustrating toll. Of course, I've also been diligently making arrangements for SDR surgery all the while, too. There has been a lot to do, a lot to put in place, and a lot to process mentally and emotionally.  I've been turned inward, quiet and focused while working through it all

 

But this morning, I am simply relieved. At last, I have arrived in St. Louis for the next leg of the journey. As she has been from the start, my Aunt is here to help me through these next 5 weeks. I'm so thankful to have her by my side. Carried in my heart too, are my dear family and close friends who are with me in spirit. You know who you are, and I love you so much!

 

The next few days will be busy. Tomorrow, I will meet Dr. Park for my evaluation and our discussion of next steps. We have much to discuss because my mobility has undoubtedly declined since first getting approved back in July 2017. As this has unfolded over the last 2 years, I've kept the team in St. Louis updated. Our collective mission since then has simply been to get me here as soon as possible, so Dr. Park can assess me in person to determine my best path forward. Provided all goes as expected, Thursday will be full of pre-op appointments in preparation for SDR surgery this Friday morning at 530 am (Central Time). 

 

It is a true blessing to be here and to have this opportunity. There are no words that can describe the comfort and relief I feel knowing that from here forward, my CP-based care will be in the collaborative hands of this team who TRULY understands spasticity in adults. That knowledge lifts a crushing weight off of my shoulders at long last because to be frank and honest, conventional CP "specialists" and family doctors alike in Canada simply have no clue what to do for youth with CP after they age out of the pediatric system at age 18. 

 

The only reason I still have enough functional mobility left to have this chance at SDR at my age - is because of the work, care, insight and dedication of the therapists at Niagara Health & Rehab Centre. Had I not found them 5 years ago -- I simply wouldn't be in a situation where I could qualify for surgery this week. Of this, I am certain. They've held spasticity up for as long as possible to get me here....and just in time too... as even they had run out of magic tricks. For the last 3 months in particular, we've been in damage-control mode with these damn legs. That's been scary for me, and for them too.    

 

So, to have a clear action plan available once again that will DIRECTLY address spasticity at its root cause, when I was previously, repeatedly told at home by said specialists that "there's nothing more we can do for you"...well, this expertise is the breath of fresh air -- and the swell of hope and intervention --- that my heart has needed for so long. I genuinely feel a calm sense of peace, relief and gratitude heading into this week. Perhaps some other feeling will come in time....but for now, I'm just so, so relieved.
   
To all of you who helped make being in St. Louis possible, thank you from the bottom of my heart. It has almost been 3 years to the day that I began working toward getting here. While the wait has been so hard and fully paved with obstacles at each turn, I continue to believe with every ounce of my being that this journey is worth it. Thank you for encouraging me onward and for your love and support. I  couldn't and wouldn't be here without you.

 

As time and energy allows, I'll do my best to share updates and reply to messages. (Thank you to those who have reached out so far --I promise I'll reply when I can, soon. Please know that your sweet well-wishes are cherished and mean so much!)  

 

For now? We're here, I'm endlessly thankful, and I'm ready to move forward. 

 

Thank you for getting me here so that finally, I CAN. 

 

Love,
Virginia

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