(Worst blog title ever. I’m tired).
Declan had an appointment with his neurologist a few days ago. Isn’t that crazy…our lives revolve, or rather are intertwined, now between various doctors and specialists and therapist appointments. A brain doctor. My baby needs a specific doctor to monitor the few things that could go ‘wrong’ with his head, his brain, his spinal cord. How quickly it all becomes part of your new normal though.
After he was born, I remember being slightly (okay maybe really) annoyed at the telephone that would not stop ringing. It wasn’t well-wishers I was wishing away, it was the multitude of different doctors’ offices that were wanting to schedule this test or that appointment. It was also Christmastime, so all I wanted was to slow down and enjoy the holidays with family and friends, but mostly just enjoy those precious first few weeks and months with my newborn baby. I wasn’t in denial, I don’t think, about his condition or him needing these appointments… it was just that I had, in his mama’s eyes, this perfect, beautiful bundle and I wanted to relish in those brief newborn moments that, I knew, would go by way too fast.
It was overwhelming at first. But as the months have gone on, the appointments have settled into a more routine pattern. They’re now just a part of our lives. If I say we’re going to a doctor appointment for Declan, Makenna will ask which one, and I can describe by the waiting room (toys!) which one it is, and she gets it. She even has her favourites (she is an incredible big sister).
A few months ago, we traveled to BC Children’s Hospital on a referral from our local pediatric neurologist, who did not feel comfortable (not having the experience) deciding on the next step of Declan’s care after his brain and cervical spine MRI last June showed a significant increase of fluid in and around his brain and ventricles. Because Declan’s development and progress with his motor skills has exceeded most everyone’s expectations, and he’s continued to shine and basically be a little rock star, I was not worried. I kind of already knew what they were going to tell me. And maybe that’s why I didn’t really feel worried. Or maybe I’m just naïve or stupidly hopeful. Either way… sitting in the waiting room in Vancouver, in the Children’s Hospital, in the Neurology department, waiting to talk to one of the best pediatric neurosurgeons in the province…I probably should have been a little freaked out?
I’m reading Dan Kennedy’s book right now (slowly, but surely… doesn’t help when my eyelids heavily slide down my eyes minutes after crawling into bed each night). Last night I read about Dan seeing his infant daughter for the first time after she had a tracheostomy. He described being “…numb; I looked, but I’m not sure I saw, or believed.”
That feeling reminded me of being at Children’s. I was there; I found the Children’s Ambulatory Care building, and then the Neurosciences department. I looked around…but I’m not sure I really saw or believed what it could mean (being there). Maybe it’s because I felt, deep down, that Declan was doing great despite this fluid in his brain and everything would be okay for now. And that is basically what the doctors told me. Unless he shows worrisome signs of hydrocephalus, his care providers will just be monitoring it for the time being, with the hopes that no interventions will be needed.
At our most recent appointment with our local neuro doc, which was just a follow up, following the appointment at Children’s…she basically said what most of his doctors (and his mom) say; he is doing well, he is thriving, he is amazing. I will take it. I know not all POLPs are as lucky. Because of that, I will never take his health for granted. He is my little miracle and I thank the stars every day that he is doing so great.