Lately we’ve been feeling like Winter is Coming.
If you’re a Game of Thrones fan you know the meaning behind this. “Winter is Coming” is a motto in the show that means take warning and stay on your toes because something bad is on the horizon. It’s also kind of literal because our memories of last winter are less than pleasant.
December 20th marked Paige’s MRI.
December 23rd came the diagnosis. (I also had an emergency appendectomy that day)
December 30th was our first neurology appointment where we learned the severity of Paige’s brain malformation.
January and February’s memories consist of the start of Infantile Spasms and a month long course of ACTHar steroid injections. Health-wise, Paige has had a pretty good rest of the year year. Her Infantile Spasms were controlled by the ACTHar and she has made quite a bit of progress developmentally that we were told probably weren’t possible. We’re thankful for that and it’s been an amazing year of watching her and our son Will grow.
The past few weeks we’ve noticed some “questionable movements” that could possibly be seizures. Luckily, Paige had a 24 hour EEG scheduled for yesterday and hopefully we get some answers. Her neurologist and I agree that the reason the ACTHar treatment was so successful is because we started it almost as soon as Paige started having the seizures. I’m hoping that if she is having them that it’s early enough and they’ll be controlled easily. Hence, Winter is Coming… We shall see…
Going back to this year, it’s been.. well, it’s been a long year. It’s been a year of the unknown. It’s been a journey of grief, acceptance, love, and adjustment. We’ve grown as a family in ways I never imagined and got our feet wet in a life-long road of a different kind of love. We’ve been overwhelmed with kindness from the people in our lives, we’ve felt lonely, we’ve gotten angry, we’ve struggled, we’ve made memories, met a bunch of INCREDIBLE families, and we’ve learned to be happy again. Constant learning and adjusting is the name of the game from here on out.
Andrew and I find ourselves reflecting on this past year. There have been so many positives and great memories but as the air gets colder, we find ourselves thrust back into the rawness and realness of last year around this time. In a way, I think it’s important to reflect on the bad and appreciate the good but it’s still painful. Still, we’re determined to have a great holiday season and focus on the great holiday memories.
I’m planning on writing about the full 24 hour EEG tomorrow and other family updates tomorrow, but for now, here’s some pictures!