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)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

Learning to Move with ABM Lessons

Over the past 2 years, I’ve referenced ABM lessons a number of times without going into detail about what this is and how we came across it. So, finally, after much success with ABM, I sat down and wrote this post about how we began with the Anat Baniel Method.

Have you ever sat and watched an infant’s body learn? It seems as every part of them moves at all hours of the day, twisting and turning, exploring, learning where their body is in space. These movements are repeated thousands of times, helping to build the muscles necessary for sitting up, crawling, walking, jumping, all gross and fine motor skills that are typically developed. When the brain is damaged in infancy, the body skips out on many of these movements, causing developmental delays like what we’ve seen with Solly.

When Solly was an infant, I think I always knew he wasn’t moving as much as a typical baby, but it never struck me how few of those subtle, brain-building movements he was making until Bea came along.

In the Fall of 2016, I was poking around the Internet, looking for new therapy ideas and resources because Solly was stuck in a rut. One year prior, I’d been so excited to move to Nashville and gain access to a new team of doctors and therapists to help Solly continue to thrive, but over the year, I felt like our gains grew smaller and smaller. Solly was hitting a plateau. I was growing concerned that this was it – there were no more gains to be made. (A crazy thought considering Solly was just two years old!)

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Our Stem Cell Therapy Experience

I’ve struggled with this post. I’ve debated on how much medical detail I should go into on a topic that I truly don’t know that much about. I also worried about sharing too much because, as I’ve learned by participating in support groups on Facebook, stem cell therapy is still very much in a research phase and, as such, it is a polarizing topic. However, because we did our own research and have had wonderful results with our first round of stem cell therapy, it’s important to share our experience. Here it is.

I never thought stem cell therapy would be an option for Sol. When I was pregnant with him, we didn’t make the necessary arrangements ahead of time to bank his cord blood. Honestly, we had a perfectly healthy pregnancy, so there didn’t seem to be a need for it.

After Solly was born and we started seeking out less traditional treatments, I kept hearing about stem cells, not entirely knowing how it worked. When I found that an ongoing clinical trial at Duke University was only for children with cerebral palsy using stem cells from their own cord blood (here are some of the results from that trial), I put the entire idea on the back burner. Around the time that I was pregnant with Bea, I heard whispers that Duke’s next stem cell study for cerebral palsy would be testing sibling cord blood, so we arranged to bank Bea’s cord blood so we would be prepared when this treatment was available to us.

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NAPA is Magical

On Day 1 of our 3 week intensive at the NAPA Center, which stands for Neurological and Physical Abilitation and is located in Los Angeles (and Sydney and soon-to-be Boston) and NOT Napa Valley, I proudly posted a photo on Instagram of Solly kicking butt and standing (with assistance) during the first hour of his intensive therapy. A Mama of another CP kiddo quickly posted: “NAPA is magical! I hope you have a great experience.”

I smiled as I read her comment, thinking to myself – yeah, yeah, I’m sure it’s great, but we’ve done intensive therapy before and I’m pretty sure I know how everything will go.

Nope. I was wrong. That Mama was right. NAPA is the most magical and amazing place on Earth. Solly made the most gains I’ve ever seen him make in a short time period.

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