Roanoke, Week 3: Finding Balance

Hello from Roanoke!

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Yep, we’re still here. Three weeks down, one more to go.

This past week had us feeling a bit more like locals. We now no longer need to use GPS to get us to the local ADA accessible playground, we have a favorite breakfast spot, Bea and I have explored the Roanoke River Greenway several times, and Ziggy is now a regular at a puppy play center. We’re finally getting into the swing of things just as we’re starting to pack our bags to leave. Continue reading

Roanoke, Week 2: I Did It!

img_2162During one of Solly’s therapy sessions this week, his therapists got really excited when he used his right hand to move a bead across a track, so they cheered, “Solly, you did it!”

And Solly replied, “I did it!”

Now, I haven’t heard him say this exact phrase yet, but I completely believe that he said it. I’ve long thought that Solly understands everything we say to him and part of his sensory issues (i.e., excessive biting, throwing his head back, flailing his arms) is simply him expressing frustration that he can’t find the words to respond to us. It’s like the words are in his head, but he struggles with which word to choose and how to get it out. Continue reading

Roanoke: One Week In

Hello from Roanoke!

One week ago, we packed up a U-Haul and drove 6.5 hours (well, 8 hours, really, thanks to Bea’s insistence that we stop every hour to get out of the car and run around) to scenic Roanoke, Virginia. No, we didn’t move here – at least, not permanently. We’re continuing our nomad lifestyle and have uprooted our family – dogs included – for 4 weeks so Solly can participate in a constraint intensive therapy at the Virginia Tech Carilion Research Institute (VTCRI).Β  Continue reading

There’s No “I” in Team

Parenting a kid like Solly has taught me more than I could have imagined. I mean, I could probably write a book simply listing everything I’ve learned, from medical terms to therapy movements to assistive technology and more.

My biggest takeaway so far is this: it’s ok to disagree with a doctor, specialist, therapist and find someone who is a good fit for your child.

Growing up, we always heeded our doctor’s advice: when I dislocated my shoulder, we took an X-ray and I went to physical therapy; when my adult teeth started growing crooked, it was three years of braces for me. Simple and straightforward. However, what I’ve found over the past (almost) four years is that medicine, particularly when you’re dealing with a unique organ like the brain, is often times more an art than a science. There’s no one correct way to rehab that unique organ.

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Miss Laura teaching us how to handle Solly so we can encourage proper body positioning

It took me over two years before I realized that not all doctors and therapists are created equal, especially not for a medically complex kiddo like Solly. Part of the delay in learning this is because we were insanely fortunate to be paired with the perfect physical therapist less than one month after Solly was discharged from the NICU. Her name is Miss Laura, and she still keeps tabs on Solly’s progress even though we haven’t seen her since we moved away from Washington, DC. What I’ve found in physical therapy is that many institutions approach rehabilitation by setting goals for gross motor skills and then moving a child towards those goals even if they aren’t ready for them. And what I mean by this is a common goal for Solly in the early days was sitting, holding quad position, walking, etc. But, often times, he wasn’t ready for those goals and would grow frustrated with therapy sessions because the therapist was essentially forcing him into and holding a position that he wasn’t physically ready to do. Continue reading

Acceptance

This Fall, we’ll spend an extended period of time in Roanoke, Virginia for an intensive therapy at the Virginia Tech Carilion Research Institute. The intensive will be 4 weeks long and includes therapy for up to 6 hours per day. Talk about an intense intensive! A part of the intensive therapy program will include Constraint-Induced Movement Therapy (CIMT) where Solly’s stronger side (the left side) will be constrained to force the weaker side to take over.

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Solly during our first round of CIMT in Nashville

We previously had 4 weeks of CIMT in Nashville at Vanderbilt Pediatric Rehabilitation right after Solly turned two. While we saw some gains (i.e. more movement in the right shoulder), because Vanderbilt’s approach was to cast the child and send them home without intensive therapy, aside from an extra hour-long appointment or two during the week, we did not experience a ton of progress with our first round of CIMT. While this approach may work for children with mild cerebral palsy, we found that it isn’t as effective for moderate to severe cases, like Solly’s.

With CIMT, the more therapy you can do while the stronger side is casted, the more effective the therapy will be. Given the intensive model available at Virginia Tech, I am eager to see how much awareness Solly will gain of the weaker side. Continue reading