Life Lately: The Highs, Lows and In Betweens
I haven’t had the heart to write a lot lately. So much is going on, but my brain is too exhausted to then think it out into words most of the time.
So many things are tough right now, and many things are also going well. On tough days, it’s hard to see the things we’ve been blessed with. On good days, I wonder how did we ever get so lucky. ❤️
Here’s a mish mash of what’s happened in the past month… although as always, I post much more frequently on Instagram than here.
I’m in the process of getting standing frames, potentially a walker, and also a custom chair for Jaxon (with a base for floor activities and also a high base to basically be a high chair and fully supportive chair). This will include a custom cushion molded to his body, head support and ensuring his spine stays straight (risk of scoliosis from slouching in typical baby equipment). All of this means months of back and forth, appointments, figuring out how much it will cost for us (and how much the government will cover), etccccc… It’s frustrating because Jaxon especially needs this equipment NOW (and has since MAY!), but who knows when we will get it…
Public physio is in charge of all that, and like all things government, it moves at the speed of the Paleolithic Era.
Plus, public physio telling me at every chance what the boys “likely won’t do”. Like, thanks, I don’t already spend every waking minute thinking of that so I’m super glad you brought it up for the 40th time this hour!
The boys are now 16 months old (13 corrected) and still not officially diagnosed on paper with Cerebral Palsy, although every single doctor and therapist tells us they of course have it. They say they only diagnose at 18 months corrected, even when it’s obvious. A diagnosis would not get us any extra help or therapies (we would still have to pay privately like we do now), so I’m not pushing the issue. However, they want to start medicating Jaxon for his tight muscles which I am hesitant to do without a proper diagnosis, because I think he has dystonia as well and I’ve heard bacolfen + dystonia don’t mix well… I don’t know! But I wish people would put more thought into my boys’ care!
Vision therapy, we still don’t have a Teacher for the Visually Impaired (TVI), when it is the law that every child with visual impairment gets one. This is someone that conducts vision therapy exercises and tells us as parents how we can help them learn to speak, read, move etc in the best ways without vision. Still on a waiting list because – you guessed it – our system doesn’t care about Jaxon’s wellbeing!
However we were also very lucky to be able to see a vision therapist specializing in CVI (Cerebral/Cortical Visual Impairment) while we were in Toronto and I have been in email contact with her for some helpful exercises and information. She is truly a lifesaver during this time.
Feeding wise! Over the past month, I transitioned the boys from breastmilk and baby formula (about 70% breastmilk by the end as my supply has been dropping since May) to real food… typically called a “blenderized diet”. Which is just what it sounds like. Instead of nasty enteral tube feeding formulas that are just sugar with a vitamin thrown in (note: not the same as baby formulas), it’s just what an orally eating child would eat thrown in a blender and run through their tubes.
It’s been a STEEP learning curve and I am still learning new things, but have many recipes that work for them now, and alternate breakfast, lunch and dinner every day to ensure they get a variety of nutrients. We also still have to do one overnight feed (only 2 hrs long now) because it’s impossible to get in all their needed calories per day (currently, but hope this will change soon as they tolerate more volumes).
Initially, our public feeding team and other specialists did not support a blenderized diet. AKA did not support my children eating real food. Because… why? Honestly they give so many BS reasons, but it boils down to tube-fed kids (and adults) being seen as “less than”. Just medical chattel. But my kids, my choice and I proudly am feeding them real food anyway (they’re on board now).
In pumping news, I am finally done pumping as of August 21. AHHH. Craziness. 16 months of pumping for these guys and then… it’s over! It’s been freeing being able to go out for more than a few hours, not “watch the clock” so much, have the time to try more feeding therapy with the boys, which brings me to…
We took the plunge and hired Growing Independent Eaters! We have JUST started (today as I write this actually) and I can tell it’s one of those things that’s going to change our lives. 🙂 I am so excited to try the tips they gave me in our first call, and of course there’s a lot more coming. It’s so nice to know someone has a PLAN to get our guys eating!
Physio wise, we are still going at least weekly plus at home exercises daily. Axel is super close to sitting on his own! He really can, but needs to be really distracted by a cool toy to stay sitting. Eventually he will want to do it himself, too. Very exciting! Jaxon is balancing for about 10-30 seconds in prop sitting at a time which is great progress. It feels like time moves so slowly since I see them every day all day, but progress is really happening.
And lastly, because being a special needs mom isn’t expensive enough (lol), some recent gear I’ve purchased to make our lives easier: a multicolour light for Jaxon (vision work), Squeasy Gear bottles for syringe feeding on the go, Miracle brand syringes, the Honey Bear Cup… and the BIG version of Jaxon’s favourite toy: the Fisher Price BeatBo!
Whew. That was long and disjointed. Thanks for reading all that, if you did. Ha!