As E gets older, her orthotic and therapy needs change. This is very individual, but I will update with what is working (or what hasn’t worked) for us!
I have found that at times, when I focused on therapy and outcomes, I began to view E’s physical challenges as obstacles to overcome. Since I am a problem solver, these obstacles became “problems”, to which I needed to find “solutions” – such as CIMT, ABM, MNRI. This played out most clearly in our last trip to California for ABM/MNRI, where I pushed to follow the therapy plan with (as I see it now) disregard for E as a person. She was sick, she was a toddler, and it was way too much for her. Desiring to please me, she mostly cooperated – but did end up shutting down emotionally. As a result, we didn’t see much improvement from that therapy trip. Therapy only works if your child is engaged and reasonably happy – an upset brain doesn’t lend itself to learning.
Since then, I have learned to SLOW DOWN. Yes, therapy is important. But not at the sacrifice of personhood. E is so much more than a “tricky” arm and leg. I would love to maximize her abilities and prevent future complications, but what is even more important to me is her heart. Wise advice from those further down the road than us – Recovery is a marathon, not a sprint. You don’t have to do it all today. 🙂
Thumb Splint – E still typically keeps her thumb postured in her palm unless consciously opening it. We have found two options useful to us – one is the SPIO wrist/thumb sleeve. It probably works better than the McKie for keeping the thumb joint out and stable, but it is kind of tight on E’s arm and didn’t fit very long (she has chubby arms); we didn’t find it helped with the wrist. Cost is around $31 and it can be ordered online (http://www.spioworks.com/category/31/wrist-and-hand). Our mainstay for the thumb has been 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 (a good thing to preserve sensory experience) and is less bulky than a Benik. There is an adjustable metal stay in the wrist area. We often 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 (tricycle, 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 have had an orthotist fashion a constraint cast out of thermoplastic material for E’s left arm when we practice CIMT. This has been much less bulky, cooler, and cheaper than a typical fiberglass cast.
We haven’t found a need to night brace, as E is typically loose and relaxed when asleep.
AFO/UCBL – We ended up going to see Dr. Paul Jordan in New York for specialized orthotics. He felt that E did not need SPML surgery as her range of motion videos we sent were within acceptable limits. He did an assessment and impressions of her lower legs and feet on a Tuesday, they fashioned the orthotics on Wednesday, and we went in for our fitting on Thursday. E got a modified AFO for her affected side and a modified UCBL for her unaffected side, which was doing some abnormal compensating. How were they different from more standard AFO’s and UCBL’s? Dr. Jordan demonstrated to us how applying “arch support” did not actually accomplish an ideal foot position, but just moved the fat/skin. This is going to be difficult to explain properly, but there was a point on the bottom of E’s feet where, when pressed, her ankle would give way and roll. By placing the support under that point (instead of the “arch”), he was able to correct her foot position. I may have said that completely wrong, but whatever he did, it corrected her gait quite substantially. Perfect, no. (but much better than the conventional offerings). Note: Dr. Jordan has adjusted the orthotics via mail based on videos we have sent and markings we make on them. They are supposed to last 2 years or so! *Highly* recommend him.
SPIO – We currently have the shorts and the TLSO vest. The shorts don’t seem to make any difference to E’s posture or gait, and so we didn’t re-order them. The vest does improve E’s seated posture, and I would recommend it for that as 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)
Although we have been using orthoses somewhat regularly as above, we haven’t been doing much targeted therapy for the last year+. I feel like we did a huge push her first 3-4 years with therapies, and while we made some wonderful gains, she definitely started to plateau in her abilities. What started to become more important was “regular kid stuff”, so this has become our new “therapy”:
- playground confidence – going to various playgrounds and gaining increased skill and confidence on the structures
- scooters – practicing on 3-wheeled scooters
- tricycle – practicing pedaling and steering
- balance/strider bicycle – practice steering and balance
- swimming – gaining water confidence
- gymnastics – with parental assistance, basic level
- obstacle courses
This has also helped our lives to feel more “normal”!
I won’t lie, E’s activities have been limited by her stroke. Although she is musical, she hasn’t been able to pursue music lessons past the introductory levels because of fine motor challenges. She is hesitant and needs assistance on playground equipment and at her gymnastics classes. She is still working at getting steering and pedaling coordinated on a tricycle and never did get the hang of gliding on a balance (strider) bike. E has noticeable gait issues in both walking and running. She has difficulty with dressing and undressing. She uses her affected hand mostly as an assist, and the arm often moves as one unit to stabilize objects more than to functionally participate. I say this all matter-of-factly, because although it is part of who she is, it doesn’t define her. We all have different strengths and challenges. Part of life is learning to embrace all the bumpy bits in ourselves and others, for we are none of us without flaw.
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.