Little Bee and Me

When I started this blog I had the best of intentions to catch up to real time quickly and then write posts on a weekly basis to keep things up to date. That was optimistic. My goal for this post is to do a quick catch up - where we are with diagnoses and prognosis for Beckett. There will be other posts to fill in the gaps on more specific details and also how things are going on a more mental health/emotional side of things. But, there will be smattering of that in this post too, because the lines blur as I start typing. Here we are, March 2024. Beckett has previously been diagnosed with Currarino’s Syndrome (CS), and Cerebral Palsy (CP). Also previously unmentioned, he has GERD, which isn’t super uncommon in babies.  When we were told about Beckett’s genetic test results of CS, the geneticist ordered tests for both Keith and me to determine which side of the family it was passed down from. There was some indication that Keith might have it, since an old x-ray on file at the ACH s...

From June 16 (NICU discharge day) to the end of 2023, Beckett had approximately 40 appointments relating to his medical conditions. These included appointments with: the Feeding Team, home nutrition, general surgery, nephrology, neurology, neuro surgery, neonatal follow up clinic, ACH vision clinic, genetics, B’s paediatrician, and his physiotherapist. It also includes a handful of appointments for imaging (MRI, ultrasounds). In my tally of appointments, I didn’t include appointments for his head shaping helmet, since this intervention is not considered medically necessary and was something Keith and I chose to proceed with knowing that Beckett would not be developmentally or medically impacted one way or the other.  Most of the summer appointments brought a lot of optimism. With the help of the Feeding Team, and hard work at home, Beckett proceeded to wean off of NG tube feeds by July 18 and he has been eating orally from that day forward. His paediatrician’s original assessments ...