As we enter the school years, I have spent some time reflecting on our journey thus far. Could we have done more therapy? Absolutely. Would it have helped E have more functionality? Probably. Would it have been worth it? Maybe Yes, Maybe No. It’s been a gradual process, like groping in the dark trying not to stub our toes. There is little assistance (in Canada, anyways) beyond the basics. If you want more, you have to search it out and do it (and pay for it) yourself – although usually the therapists and physicians (pediatricians, GP’s) are supportive and assist if/when possible. We have done some series of twice a week PT and OT sessions, but don’t find many gains. Instead, we have decided to focus on typical kid activities and regular life experiences for most of our “therapy”.
- playground confidence – going to various playgrounds and gaining increased skill and confidence on the structures
- scooters – practicing on 3-wheeled scooters
- bicycle with training wheels – practice steering, pedaling, and balance
- swimming – gaining water confidence – started private swimming lessons at age 7 and this has been going so very well! (Highly Recommended) We plan to continue these for many years!
- Taekwon-do – E started in a kids’ class, and this has been so great for balance, proprioception, and gross motor skills (Highly Recommended). We plan to continue this for many years!
- gymnastics – E continued this for age 5-6 in a younger kids’ class, but discontinued after this point as it got too tricky to move on to further levels
- obstacle courses – tunnels (crawling), balance beams, ramps, hoops, etc.
Thumb Splint – E still typically keeps her thumb postured in her palm unless consciously opening it. Our mainstay for the thumb continues to be the McKie thumb splint. Measuring is easy and we have had no issues ordering online – cost is around $25. (http://www.mckiesplints.com/features.htm). The palmar surface is nice and open with this splint.
Wrist Splint – E’s wrist tends to bend downwards quite often throughout the day. She is able to elevate it with effort since our Alabama CIMT camp. To maintain range of motion, we find the Ottobock cock-up wrist splint very effective. It also doesn’t cover the whole palm and is less bulky than a Benik. There is an adjustable metal stay in the wrist area. We layer the Ottobock over the McKie.
Elbow Brace – We continue to like the Bamboo Brace for elbow posturing. It comes with 5 or 6 different strengths of stays that you can use interchangeably. The bamboo has been helpful for keeping the elbow straight when learning to hold handlebars (scooter, bicycle). We also use it when E is eating as that is another time her elbow postures. It is also a pretty cheap investment at around $50 online. (http://www.amazon.com/The-Bamboo-Brace-Infant-Toddler/dp/B0051747D8)
CIMT Constraint – We just purchased an economic wrist splint from her orthotist for the left hand, and put a sock overtop of the fingers. E is able to control herself and not remove the sock now that she is older. We haven’t done much CIMT, but she actually asks to sometimes. We haven’t done much not because she isn’t willing, but because it takes such an overwhelming amount of time for me 😦
AFO/UCBL – E underwent serial casting of both ankles when she was 6 to increase her dorsiflexion range of motion in her right ankle. Following this, she moved right into a new AFO. We continue using an off-the-shelf Cascade Chipmunk UCBL for her left foot. I should mention, we also found a new orthotist, who is AMAZING. He was able to analyze Dr. Jordan’s AFO and understand the intent of it, and make some suggestions as well. Basically, a fixed AFO is great for running and fast movement. It’s very stable. However, it does not allow a lot of joint movement. Since we were using it all the time, it contributed to her DECREASED range of motion. A hinged AFO is great for standing, walking, going around the house. It’s not as stable, but it allows for a lot of joint movement. Since E’s ankle is pretty stable right now and doesn’t collapse over on her very often at all anymore, she does not need the AFO to be as rigid in the ankle area.
We purchased two AFO’s, a fixed and a hinged one, with the plan to use the fixed one for running, parks, out and about, and the hinged one for at home, indoor (more sedentary) activities. However, after trying both out, we use the hinged one consistently. It has these built in “tendons” on the sides that force the foot into dorsiflexion at rest. (When it’s off her foot it sits at about a 30 degree dorsiflexion) It can even be used overnight for stretch. It seems to stabilize her ankle very well (which is not overly weak at this point), and after 6 months of use her foot is almost straight again. She still tends to walk on the outside (lateral) edge of her foot when not in her AFO, and her foot is slightly curled (c shape) inwards.
Inverse Wedge Shoes – We are also using stretch wedge shoes again, about 30 minutes a day while standing still (playing iPad or computer games). I also highly recommend these for increasing/maintaining range of motion. Just a wedge (about 10 degrees maybe?) added onto a sneaker by the orthotist. We measured what angle she could comfortably passively reach and aimed for a similar wedge angle.
E is being monitored every 6 months by the orthotist and it is planned to make a new AFO yearly for her now. We will continue with the hinged/”tendon” one for awhile now, as well as the stretching wedge shoes.
SPIO – We continued to use the SPIO TLSO vest for age 5-7. The vest does improve E’s seated posture. It is a cheaper alternative than the DMO and it is easier to apply than Theratogs. It is hot in summer, though, so we mostly just wear it in the fall, winter, and spring. Each of these fit about a year or so before we have to size up. The TLSO is quite adjustable and forgiving if you get it a bit on the larger side. We also order these directly online. (http://www.spioworks.com/product/26/classic-tlso). E really dislikes wearing the vest now that she is older – she dislikes the tight sensation, the warmth, and is embarrassed about the bit that peeks out her shirt. I had to bribe, threaten, and cajole. We have come to a point where I allowed her to choose between the SPIO vest or regular chiropractic adjustments, and she has chosen chiropractic instead.
We had been advised to hold E back for a year before starting Kindergarten as she also has constitutional growth delay in addition to her gross motor delays (balance, coordination, physical skills). She didn’t qualify for an aide (being “too functional” to qualify for access to the limited pot of funding), but was unable to independently potty or dress and has difficulty navigating in crowded situations. So instead, I homeschooled her so that she wouldn’t fall behind. It went so well, and we were able to cover the standard information so quickly, that we have decided to continue the homeschooling route!
So, that’s where we are at! As to where we are headed, in the future I hope to pursue:
- CIMT – as E is able to consciously choose to engage in it
- TMS – transcranial magnetic stimulation – offers benefits similar to CIMT but with less effort; I hope to combine this with CIMT in the future
- Robotic gait training, Robotic arm training – these require a minimum leg/arm length which E does not yet meet
- Swimming – particularly water walking and deep water walking for gait training, but swimming is the perfect rehab sport for stroke!
I am happy with where we are, and yet there are always bittersweet twinges of where we could be. I am sure these feelings probably always remain. Being a part of a pediatric stroke community there are stories of both challenges and successes that we share, and those that we do not. Some face intense issues – seizures being one – that we have not encountered. Others seem to recover almost completely (Mia’s Pediatric Stroke Blog).
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.
“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)