The first week at home from the hospital I was managing dozens of calls with 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.
Steve Maraboli
As far as therapies go, physical therapy has always been a mainstay. At different points we have also included occupational therapy, speech therapy, behavioral therapy and check-ins with an orthopedic doctor, 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 6 months ahead in speech comprehension but 1 year behind in language development. So, our speech therapist up-ticked to twice-a-week private sessions.
Additionally, shortly after his second birthday, he went through a huge growth spurt and we started noticing a big difference in how he was walking. He started 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 of the week. This included seeing a physical therapist, speech therapist (2X), and doctors appointments that bred more doctors appointments. It’s an exhausting process, and every month is different and not always quite that chaotic.
However, as major developmental milestones happen, we have to follow him a bit closer and I am starting to see a pattern where thats when we notice these changes which generally equals more appointments.
I try to make these days as fun as possible and it has now become habit that he gets a treat after. This has racked up quite a large Starbucks bill, but after all, life is just too short not to enjoy an occasional cake pop.
Elliott's Journey 