This past year was by far Thomas’ most busy and challenging. So much time/effort and resources revolved around his surgery which took place in June. Percutaneous Myofascial Lengthening (PERCS), a highly specialized procedure that releases contractions from the legs/ankles - areas that Thomas overused by pointing his toes, locking his knees and crisscrossing his legs when he attempted to stand, sit even lie down.
We travelled to Summit, New Jersey to have this done with Dr. Nuzzo (1 of 2 surgeons in North America) and extended our stay another week in NYC to receive immediate rehab. Thomas’ recovery was substantial – much more than I anticipated. Although the procedure was minimally invasive (pin-hole incisions that did not touch the muscle), the scope of the work changed the dynamic of Thomas’ whole lower body.
Thomas immediately gained movement/flexibility – his legs spread wider, he relied much less on crisscrossing and his ankles were pitched back to give him a flatter foot to stand (finally, he can wear a boot!). I noticed little things right away like reaching to pick things up from the floor while sitting in his car seat and pulling on the front belt; his hips were freer. Thomas’ knees folded more easily when he sat, sometimes dangling which was new. With added stability on his feet, Thomas could stand for a period of time with his walker- independent of my support (see pic right in moving hay ride!) and this stability transferred to his upper body, allowing more control of his arms and hands.
But there was misuse too; Thomas would spread his legs too much when he attempted to crawl, he was more prone to stand, even in situations that didn’t call on it and he engaged in a term called “jack-knifing", bending at the hips and holding his upper/lower body in a “V” while trying to sit/stand, instead of folding up/down in a squat.
Thomas also experienced much pain and trauma following the procedure and was in a state of disassociation; initially wincing and guarding his movement because it was so unfamiliar.
For weeks Thomas wore casts on his feet and knee immobilizers to bed to safeguard the new range. He now wears ankle foot orthotics to help reinforce new stepping patterns. Most importantly, Thomas must “use it or lose it” - his success incumbent on being on his feet and learning to access the available movement properly and override old patterns.
This created an immediate need for much more support; to provide Thomas with the therapy he needed to learn to inhibit misuse and move with greater ease/mobility and to provide Thomas with the opportunity to integrate this movement throughout his day. It was an intensive period of care; it was constant and exhausting to continuously engage/motivate Thomas into purposeful movement. But I never lost sight of the tremendous opportunity that was at hand or for the respect and sensitivity towards Thomas’ ability to learn something new, particularly with the added confusion and discomfort of surgery.
As the summer progressed, we plugged away. Thomas’ casts were removed and we spent most of August in northern California where he worked intensely with skilled practitioners familiar with the surgery who helped Thomas move past the guarding and into more differentiated movement.
The changes that took place in the past 6 months are significant – the most obvious is that Thomas is on his feet which he enjoys and which calls on different skills and awareness. We never leave the house without the walker! Time and efforts continue to guide Thomas towards easier, more fluid movement and function; function that takes shape in everyday tasks like getting from here/there, stopping to engage in or follow Thomas’ interests, or just have meaningful conversations. We are guided with a simple goal; to empower Thomas to participate in his life with as much independence and allow him the time and focus he needs to participate with as much attention and intention. The rest is up to him…
Following our busy summer, Thomas started school at Sunnyview- a school dedicated to children with physical disabilities. Thomas really enjoys it - it’s warm, physically friendly and he is loved by staff. Integration has been slow, new situations are typically difficult for Thomas and he exhibits behaviours that are not purposeful or lend to cooperation. Familiarity continues to be exchanged on both sides and the school is very open to feedback. Most importantly, Thomas has a very caring and devoted teacher who is eager and interested to support his learning in all areas and we communicate extensively.
The single largest drawback to school is the excessive time Thomas spends in his wheelchair; not only does this affect his physical goals but it spreads to other areas of development as well. There is a direct relationship to engaging the brain in movement/awareness and Thomas’ system downgrades dramatically when is not participating in either. Because there is not a 1:1 care-giver ratio to support his mobility and because academics/transportation are primarily sedentary, we desperately try to provide for the lack of movement outside of school. Thomas is never in his wheelchair at home, his transportation is self-directed as much as possible and he takes part in bi-weekly 4 day intensive blocks dedicated to movement therapy. The school administration, in appreciation for the learning Thomas does at home, granted him a later/quicker bus ride in order to participate in his morning routine and circumvent a 7:20am pickup/90 minute ride with other children.
School remains a big priority and paramount to Thomas’ learning (just like other children) so striking the right balance is critical and his participation continues to be monitored closely.
My training with Anat Baniel carried thru 2010 and I will complete my basic practitioner segment in May of this year. Following graduation is an intermediate children’s mastery which specializes in working with the special needs population – I have been eagerly waiting for this and it will elevate me to work more intently with Thomas and possibly other children. Anat’s work and training has enlightened me in many ways to understand and appreciate the degree of Thomas’ neurological issues and how to empower him to overcome not just physical constraints but emotional/social and intellectual limitations as well. It is by far, the most empowering use of my time which I channel directly towards Thomas’ development and care.
It was an incredibly busy and full year and as I wrap up my final thoughts/recollections of 2010, I am well into planning 2011. My first order of business is hosting a very special 7th birthday party for Thomas, which takes place today! Looking back on his special day, I could have never predicted how our lives would change or the extraordinary childhood Thomas would lead. I do know is that I will continue to be guided by an unwavering commitment to honour Thomas’ life with dignity and learning that will serve him for the rest of his life.
I would like to extend my thanks to the many generous people who provided the financial resources to support an extremely ambitious and eventful year. A lengthy recognition list is posted on Thomas’ website (please see www.hopeforthomas.com) which includes hundreds of individuals and businesses who collectively contributed towards Thomas’ goals, including those who gave generously of their time and talents. I would also like to acknowledge the team of dedicated professionals who worked passionately with Thomas to help him overcome a difficult transition following surgery; Judith Dack, Cheryl Eichner and Marcy Lindheimer, who collectively brought relief and clarity to Thomas and created more freedom to move.
I look forward to keeping you posted on our plans for 2011, as well I am committed to creating a new video to chronicle the next chapter of Thomas’ journey (for those who have not viewed the earlier years please see video at left sidebar).
Thank you again for your continued interest and support of Thomas.
I wish you and your families the very best in 2011.
Linda
PS If you would like to "chip in" towards Thomas' goals this year, and/or have aeroplan miles you are able to spare towards Thomas' efforts, please see links at side bar for direction.
