Hello again! Here’s an update

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 himself steady in four point. I can tell that Beckett is able to fight the extension more often than he used to and certainly has more control over his muscles than before, but the reality is that I think it will take quite a bit of time for him to gain more control over this undesirable movement pattern that makes it really hard for him to balance or sit independently. 

Another amazing thing that happened in October was the launch of Little Bee Gallery. For those that don't know: my sister, Melanie, and my Aunt Suzanne (both of whom are amazing artists) created a non-profit online art gallery that supports Beckett's special needs. The support from family, friends, and strangers has been nothing short of amazing. The art sales and donations from people in the first 2 months has helped cover the cost of all of Beckett's weekly physio appointments, and four 2 week intensive therapy sessions for 2025. This has taken such a load off of our shoulders as Beckett's parents. All we want is to do everything to help support Beckett and his development, and help him achieve as much independence as possible. But that has come with a large financial burden since he was born, and since we are still waiting (like hundreds of other Albertan families with children with disabilities) for financial support from the province, Little Bee Gallery has been life-changing for us. We don't have to cut back on interventions or equipment that might help Beckett thrive - we can give him what he needs, thanks to you all. Thank you doesn't really cut it, but Keith and I are endlessly appreciative of Melanie and Suzanne and to all who have supported the Gallery, and everyone who continues to be part of Beckett's cheering squad. You all play a part in keeping our spirits high and helping Beckett to reach his potential. 

The start of 2025 hit us with a bad cold in the household. This was Beckett's first real illness, and I did not handle it well. Beckett had such a bad cough it would make him gag and throw up regularly. He was struggling to catch his breath during his coughing fits that happened every 15 minutes. Medical anxiety is a normal outcome for parents of NICU babies, and I am prone to anxiety at the best of times. We ended up bringing him to Emergency just to make sure he was okay, and that he didn't have anything in his lungs. Because of his underlying conditions, they saw him reasonably quickly, got a chest X-ray done, and confirmed that he had a normal (albeit nasty) viral bug. Having him looked at calmed my nerves a bit, and made it easier to get through the next few days of coughing fits. He is now almost back to normal, with just an occasional cough, and some boogery nostrils. It was a brutal week, but we all got through it.

Beckett has just wrapped up his first therapy intensive of 2025. He missed the very first day because of his cold, but he's been working hard since January 8, and we are so proud of the hard work he's doing! The focus this time around was to build up his crawling skills. In physio they did some new exercises with him to encourage him to army crawl, and helping him with the coordination of the movements of his arms and legs. He has a lot of strength, but he doesn't know how to put it all together yet on his own to get moving. 

Last week, Beckett got his first pair of Ankle Foot Orthotics (AFOs), which help stabilize his joints and keep his foot and ankle in a correct position. We had to get him some special shoes to wear with them, because it's very difficult to fit a ridged plastic orthotic into a normal shoe. His "Billy" shoes have a zipper that open the whole top of the shoe so that we can just plunk his AFO-donned-foot right in there and zip it up. They are also super cute, which is certainly a plus. We will be using the shoes and the AFOs more and more as we're getting his new standing frame and gait trainer at the end of January - I can't wait to have Beckett exploring the house more independently, possibly damaging the walls and furniture a little along the way!

Beckett continues to make lots of different noises, but has not said any words. We continue to work with a Speech Language Pathologist to help him with communication (in any form), and hope that one day this may lead to him speaking. It is one more "wait and see" scenario. Up to 25% of people with CP are non-verbal, so there's no guarantee that Beckett will speak. My main wish at this point is that Beckett finds a way to communicate and express himself. I'd be lying if I said I don't deeply want him to speak; of course I do. Just like I want him to be able to walk and run. But, at the end of the day, the most important thing is that he's happy and healthy, which he seems to be. We'll continue to support him with lots of therapies that will improve his skills and abilities.

Feeding remains a time consuming and sometimes stressful ordeal. Beckett is still orally feeding 100% of his intake, and continues to grow, but he struggles with different and new textures (leading him to gag and often throw up). We are taking things slow, and are starting to see some improved oral skills - like closing his lips to keep the food in his mouth, and sometimes even properly chewing his food. He has also started to (sometimes) properly suck on a straw to have milk and water, so we don't just have to pour it into his mouth from a cup and hope that he swallows some. These are promising signs of progress so we're keeping at it, and hoping that we will not need to go the route of a feeding tube in the future. Time will tell, but as long as he remains on his growth curve, that's the main objective at this point. 

I think my next blog post will focus more on what this journey has been like for me, from an emotional and mental health perspective. It's something I've wanted to share a bit more about for a while, because it's a roller coaster of ups and downs and I think sometimes its helpful to hear about what it's like in a direct way. Selfishly, I think it might also make me feel stronger, and like I don't have to always put on a brave and happy face, which can be tiring sometimes. I'm not sure exactly when I'll be writing that one, but if you are interested in reading on this subject, feel free to send me a message of encouragement to be vulnerable and take the time to share my feelings. Life has been super busy, and I think I am finding it all too easy to not provide updates. Sorry about that. Here's an amazing picture of Little Bee sitting independently like it isn't a big thing, what a champ: