Lately: Hippotherapy and Full Weeks

Y’all, it has been a week of crazy busy-ness. We have 11 Solly-related appointments this week alone and there’s really no slowing down until we go to Virginia Tech next month for intensive therapy. To say I’m exhausted is an understatement. Maybe the word “overwhelmed” more appropriately captures my state of mind right now.

But, enough about me. Here’s a quick update on Solly:

Last week, our beloved Nanny Jen captured some great photos of Solly at his hippotherapy appointment at Full Circle Therapy:

Have I mentioned how much Solly loves hippotherapy? This therapy has been amazing, not only because it works so many muscle groups at once and has made Solly incredibly strong, helping him to move forward in independent sitting and taking steps in his gait trainer, but also because it is a fun therapy for him. He acts like it’s play time and not therapy. Every time we hit the driveway for his hippotherapy appointment, he starts shaking and laughing with pure excitement. He cannot wait to sit up on his horse. I have loved horses for as long as I can remember, but having a child with special needs has introduced me to a whole new level of love for these animals. Continue reading

Advertisements

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.

img_1860

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

Solly is a #StrokeHero

This year, Solly was recognized by the American Stroke Association as a Stroke Hero. I submitted his story for consideration to help raise awareness that infants and children can and do have strokes – that it isn’t as uncommon as doctors say it is, that there are therapies and procedures that can make a huge difference, and that after a stroke or cerebral palsy diagnosis, life can be wonderful. I was so happy and honored when they chose to include Solly’s story, which was shared on the American Stroke Association’s Facebook page on August 20th.

See the full post here.

39594135_1708394919290302_5836306216720007168_n

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!)

Continue reading

Count Your Blessings

When we were on vacation, we received some news that isn’t great.

Don’t worry: Solly is healthy and happy and nothing about that has changed. I’ll write more specifics later, but, in short, we were notified by a specialist that Solly might not be a candidate for SDR, a potentially life-changing surgery that would permanently eliminate his muscle tightness. We have to do some legwork – a sedated MRI and a consultation in St. Louis – before we know the answer.

But, this post isn’t about SDR. It’s about how I deal with potentially bad news.

img_1821When you parent a medically complex child, you quickly learn that this life is an emotional roller coaster. One day your child does something amazing, something that doctors predicted he would never be able to do, and then the next day, his journey takes a step backwards – or, on some days, many steps backwards. As easy as it is to wallow in bad news and feel down about whatever that backwards step is, I’ve found that allowing those negative feelings to stick around is not only not productive, it also tends to rub off on Solly and Bea. If I choose this route, no one is happy and we remain at a standstill until I’m able to dust myself off and move forward. Continue reading