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

Advice for a Family New to a Pediatric Stroke Diagnosis

Originally published on October 16th on the American Heart Association Support Network blog.

1

No one expects to hear that their child has suffered a stroke. When a stroke diagnosis is given to an infant, child, or teenager, often the first thought is: “…but, wait, strokes only happen to the elderly. How can my child have had a stroke?” The first hours, days, and even months following that diagnosis can be overwhelming, confusing, and downright scary.

I should know. My son had three massive strokes at birth.

I’m now four years into my journey of parenting a perinatal stroke survivor. After a year of living in a pretty dark state of mind, I dusted myself off, dove into researching how to best care for my son, and have transformed myself into a confident caregiver of a child with special needs.

As part of my transformation, I’ve found myself helping other parents through this uncertain journey. When I’m approached by a family new to a pediatric stroke diagnosis, here’s what I tell them. Continue reading

Solly’s First Day of School

Well, this happened last week.

img_2040

Solly’s First Day of School

After a sleepless night and crazed morning on my part, I woke up Solly, dressed him in an outfit that he’d picked out the previous week, and packed up his brand new school bag, then Mike and I took him to High Hopes in Franklin, TN. I wheeled him into his new preschool room, chatted with his teacher for a few seconds, and then tried to give him a kiss goodbye – at which point he quickly pushed me away because, you know, preschool boys are too big for kisses from their Moms.

And then it became official. Solly is a preschooler.

Continue reading

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

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