A week in the life...
In my first week home from the hospital, I fielded dozens of calls from doctors, specialists, and therapists. This was clearly not 'normal,' postpartum activity, but it was our normal. As far as it goes with Elliott we have always fielded numerous appointments a week.
Over the years, we have been able to slowly cut some doctors and therapies, but what I have realized is getting admitted home after a NICU stay does not mean that it's all over and downhill from there.
Far from it.
“Life doesn’t get easier or more forgiving, we get stronger and more resilient”
As far as therapies go, physical therapy has always been a mainstay. At various points, we have also included occupational therapy, speech therapy, behavioral therapy, and check-ins with an orthopedist, neurologist, ear, nose, and throat specialist, developmental specialist, pulmonologist & his pediatrician.
Because of his stroke at birth, due to having no blood in his body, he is also getting bi-annual developmental checks. At the last one, we discovered that cognitively, he is tracking six months ahead in speech comprehension but one year behind in language development. So, our speech therapist upped to twice-a-week private sessions.
Shortly after his second birthday, he went through a huge growth spurt, and we began to notice a marked difference in how he walked. He began toe-walking, tripping often, and putting little weight on his right foot.
After a call to our pediatrician, she referred me to a leg specialist, who referred me back to our neurologist, who referred me to a cerebral palsy specialist, who then officially diagnosed him with Spastic Cerebral Palsy.
During this time, a typical week had us in appointments every day. This included seeing a physical therapist, speech therapists (2X), and doctor's appointments that led to more doctor's appointments. It's an exhausting process, and every month is different and not always quite that chaotic.
However, as major developmental milestones arrive, we have to follow him a bit more closely, and I am starting to see a pattern: that's when we notice these changes, which generally means more appointments.
I try to make these days as fun as possible, and it has become a habit: he gets a treat afterward. This has racked up quite a large Starbucks bill, but after all, life is just too short not to enjoy an occasional cake pop.
