Little Bee and Me

Happy New Year! I meant to create a blog post a few weeks ago to wrap up 2024, but life got busy and here we are. It's been a long time since I've written an update, so I guess there's quite a lot to update you all on.  In October, Beckett completed his 3rd ever therapy intensive at Canadian Centre for Development. He continued to work on his independent sitting skills, weight bearing in his arms, his intentional reaching and grabbing. He did really well, and within a few weeks we really started to see his body awareness and strength improve. This is what we've been told from other families that have been through intensives - normally you see the biggest impact about a month after the intensive wraps up. This was certainly true after his 3rd intensive. His posture and strength is so much better than before. We are still constantly fighting his strong extensor thrust that results in him throwing himself backward when sitting, and makes it really difficult for him to hold...

 I'm baaaaack! 💅 And I am exhausted, but for the best reason: the launch of Little Bee Gallery  was such a huge success, we're running low on our original inventory, and a bit run off our feet!  For those who missed the news, myself and my aunt Suzanne have formed a non-profit art gallery, with all net proceeds going directly to Beckett's special care costs (more on that below). We launched with a lot of pomp and circumstances, as any new business wants to do, and an online auction on select pieces - but don't worry, we're still open for business!  Our online gallery features originals and limited edition prints of artwork by myself and Suzanne, and special featured pieces donated by our Friends of Little Bee artists.  We will continue to add to the artwork available, so please help us continue to keep the ball rolling. If you or someone you know is in the market for a piece of art, I would love it if your first stop was our site. And if you're not in the marke...

For those who don't know me, I'm Melanie 👋 - Chantale's twin sister, and known to Little Bee as Aunty Mommy 💕 Little Bee and Aunty Mommy I've been thinking about writing a guest post for a long time. I have so many thoughts, emotions, unsolicited advice, rants, stories, etc. etc. etc. that I want to share, but don't know where to begin. So, what follows is a little bit of all the above, but mostly just Auntie Mommy's stream of thoughts. There's lots more where this came from, so I expect you'll be hearing from me again soon. Little Bee Beckett is my fave guy. Seriously, I just can't get enough of his sweet little face. But he's so much more than just a cute face (he does have the cutest face though).  Just cute It has been such a joy to watch Beckett grow and learn new things. Yes, he is behind, but I could not be more proud. His usual day is filled with more exercise and physio than a professional athlete (probably. I actually have no idea wha...

Hello! It's been quite a while since my last Beckett update, and I'm very sorry! I have my reasons, of which include: we bought a house, sold our old one, had a two-week therapy intensive for Beckett in June, moved, and I started back at work (plus continued with regular weekly physio appointments and less frequent other appointments of various types). It's been busy, but generally things are going well.  Beckett had a two-week intensive at Canadian Center for Development (CCD) at the beginning of June. I had hopes that he would "master" independent sitting during this intensive. I think my goals and expectations were too black and white for both myself and Beckett. Beckett still isn't sitting independently. Even though the skill has not been "mastered", during this intensive - and in the weekly physio sessions since - we've seen a dramatic improvement in Beckett's body awareness, his core strength and his posture. He has all the building blo...

Back in October, when we were first told that Beckett was at a high risk of developing cerebral palsy, we were told that because he wasn't "medically complex", AHS could only offer physio through the Pediatric Rehabilitation Centre (PCR). We were also told that the referral itself would take at least 6 weeks, and the sessions would be every 2 weeks (optimistically) and many of them would be through Zoom. To be quite frank: this was, and is, total crap.  I read a book when Beckett was in the NICU called "The Boy Who Could Run But Not Walk" - I won't summarize the book here, but it's written by a neonatologist/pediatric neurologist. The book emphasizes, and the author's lifetime work reinforced, that early intervention with therapies (such as physio) is critical in maximizing the outlook for kiddos who are neurodivergent.  We were very disappointed that this was all that was able to be offered through our public healthcare to Beckett at such a critical...

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 ...

When Beckett came home from the hospital on June 16, he was still being fed with an NG tube. His last week in the NICU, he was assessed by an occupational therapist (OT) to help progress his oral feeding skill. The OT’s first assessment was very brief. Beckett didn’t open his mouth when a soother was placed on his lips and he didn’t suck on a gloved finger when put in his mouth. The OT said he didn’t have a rooting reflex, and said that was all she’d do for now but would come back the next day. I remember feeling so discouraged after that initial meeting, because I felt like the conclusion reached was that he didn’t have a reflex that was required in order for him to learn to eat. I saw a future of tube feeding Beckett, blending everything into liquid form for the rest of our lives. I will say off the bat, that this did not turn out to be our reality, and I’m very grateful, but also that if it had turned out that way, we would have made it work as a family. It just would have really su...