Happy 6th Birthday Nathaniel!
We are celebrating Nathaniel’s sixth birthday this weekend. I’ve probably said it about each year, but it is unbelievable that he’s six. When you parent and love a child who has bore labels like “prognosis: poor,” “failure to thrive,” and “unadoptable,” every year is a milestone. When that child has survived multiple episodes of sepsis, respiratory failure, accidental trach decanulation, aspiration pneumonia, medical formula intolerance, and dehydration, every birthday is significant.
Our celebration has been quiet and family focused. But today’s birthday party commemorated a number of significant things:
Nathaniel’s first year of life without an overnight hospitalization.
Nathaniel received the fewest doses of anesthesia of any year of his life so far.
For the first time, Nathaniel received 100% of daily calories and fluid needs orally for five months.
The longest stretch of consistent weekly participation in occupational, physical, and speech therapies without interruption for medical care or treatment.
Nathaniel began a new, equine based speech therapy.
He was welcomed into the adult laryngectomy communities locally and online, and we began exploring options for speech with an electrolarynex.
He participated in Children Sunday School classes, Children’s VBS, and Children’s Worship at church.
He participated in a weekly homeschool co-op with typically developing children.
Our family traveled the farthest from home and to an area more remote from a designated children’s hospital.
Our family and Nathaniel received the least amount of private duty nursing support ever. For three months, we had no nursing support at all.
Our family began recreational biking together.
Nathaniel began Kindergarten.
I’m sure there were other noteworthy accomplishments this year. It definitely feels like we’ve transitioned out of living in sick or recovery mode. Nathaniel is still a trach kid with challenging medical conditions, a backpack of medical supplies that must always be within reach, development delays, and obstacles to overcome. But being healthy has become more our norm; we’re making steps forward. That is something to give a big dinosaur roar about!