Monday, July 6, 2015

Line Repair Serendipity

Bo has had this line since he was 20 months old. It was starting to feel sluggish and stiff and we babied it along as best we could, knowing it would eventually need a repair. His line broke at 7pm on a Friday night. Of course. But, luckily, the surgeon who placed the line nearly 6.5 years ago was the one on call.

He agreed to fix the line in his office. Bo was ready to roll before we would have even been called out of the ER waiting room. Lucky, lucky, lucky.

We are planning a family vacation, later this summer, and I am so glad the line broke and was fixed before we left the city.

Tuesday, April 14, 2015

Easter Season

As we experience our own agonies and ecstasies In-Real-Live through the neverending Easter Season, I am here to let you know that Bo is doing great.

He's doing so well, in fact, that I now have time to fret. I have time to FB. I have time to change jobs. I have time to get fat. I have time to plot out a long-term way to make amends to my body for 8-years of neglect. And I have the privilege to dream of Bo's illusory future, as if he were not a child with a devastatingly rare disease.

It's true that his growth has stalled out. It's true that he has stubbornly stayed the same height for so long, I suspected that he willed himself to not grow taller, like he is willing his ever-rotating staff of nurses not to move on, and willing himself to stay in second grade (not gonna happen). He has been the same height for so long that even his wait-and-see doctors have finally given up the ghost, and suggested we consider growth hormone treatments.

Shortness of stature isn't unusual in the 100% TPN-dependent-since-birth club. No one is really sure why this is the case. Much in the same way that no one is really sure why these kids also tend to have bone density issues. I mean, they are getting the more precise kind of personalized medicine there is. All the calcium and vitamin D and phosphorous is painstakingly calculated by his dietician, GI and pharmacist. Nephrology double checks the numbers and gives a thumbs up. Endocrinology says the short answer is, no one knows.

While it is true that Bo brought me to tears a year ago when he asked my why his little sister was the same height as he was, it is also true that he's well-loved wherever he goes, that his peers and schoolmates innately dote on him with a tenderness you wouldn't expect from a band of 7-8 year olds.

He will always be a skeptic, and fiercely committed to empowering himself. These are all attributes that will serve him well, long after I have departed this world. I try to remind myself how thankful I will be when he can advocate for himself in the medical arena. That I have given him a sword and shield, which I hope to guide him in their merciful uses.

He understands the longer days due to the motion of the heavenly bodies. He doesn't feel a connection to God in any specific way. Maybe he is so awash in the miraculousness of being that there is simply no distinction between him and God?

We have celebrated the 6 year birthday of his central line. We are making plans for summer camps, science workshops and art classes, aka Summer Jenga. We celebrate the mercies that have brought us so many todays.

Happy Easter