Short update: Job's fine. No big changes!
Long update: Job climbs up and down the couch and stairs with ease. He cruises (takes steps, while holding onto something for stability) along couches or tables or stools or our legs but refuses to make the next jump to reaching out between a stool and couch, if there's a bit of a gap. He will take some steps holding onto someone's hands or his push cart, but he has to be interested; he won't just perform for us on cue.
Job has always been so sweet and cheerful, but we're starting to see him insist on his Definite Opinions. It's developmentally totally appropriate, but it is jarring to see him be so demanding suddenly.
He gets especially frustrated because communication is still difficult for him. We've made some gains but are definitely working hard to help him help us to understand what it is he needs.
He can say "Gan-pa," "uh oh," "hi," "peek boo" and "'at" ("cat" but used for all animals); he signs for "more" and nods his head "yes" and shakes his head "no"; and he makes a quacking noise and pants like a dog. He said "Gan-pa" for the first time back in May, so it's not as if we're rapidly progressing in our language acquisition attempts. Still, I remind myself that we are progressing. We see our speech therapist as I request but since there is progress, we're holding off on weekly therapy/other interventions.
It is very hard for Job to work on his gross motor skills AND increasing his language (whether by sign or speech). He can only focus on one or the other, so we'll see some language gain (a new word/sign) and then a few weeks later he'll switch to some new gross motor gain (more stable foot placement), then a few weeks after that, some new language gain.
This is almost certainly because of the way his body and brain are (inadequately) oxygenated. I am very interested in the current studies on low oxygenation/oxygen deprivation and how this affects motor planning and mental processing. This is one of the big new areas of research for HLHS kids (as part of the general trend of researching how quality of life can be increased rather than "just" keeping these kids alive), and I can't wait for conferences/papers to be put together/published on the topic. I want this to be a more frequent discussion than it has been.
After his cold and then GI issues stemming from his cold (mid November) we went back on two of his digestive meds. So we're back up to 8 meds and 5 med times. It feels like backwards progress, but I am grateful he's keeping food down again. We're going to make a push to get off of these two meds in early January.
Job had his big cardiology check up last week and is doing ok. We need to adjust some of his medications and perhaps go on a few additional supplements/meds because his heart function isn't quite where we want it. Though his tricuspid valve regurgitation is unchanged, it's likely we won't be able to wait until OHS #3 (the Fontan) to deal with that problem and will be getting an extra OHS next year or so. Currently, his blood pressures and flow are still too high for him to be eligible for the Fontan (part of why we'll likely do a valve repair/replacement sooner rather than later), which is part of the med adjustments we're doing.
None of that is new news, and he's stable, but I still struggle to not be disappointed that there wasn't some miraculous improvement.
We'll continue to dialogue often with cardiology, but don't have another cardiology appointment on the schedule until April. And we'll likely do a cath in the spring/early summer, to get some hard numbers on his pressure problems so we can perhaps then start to attack that issue more intensely in preparation for Fontan eligibility. I am NOT used to only seeing them every four months. It's exciting, yes, but it's also a bit intimidating. And it's very odd! I still expect at least monthly appointments, if not more often, because that was our life for so long.
I've been trying to figure out how to articulate what it's like to be in this new, awkward stage, of Job's medical journey, but just can't figure out what to say (thus no posts). There isn't some clear cut goal to strive for anymore (like getting off oxygen), and he looks so much healthier. Everything is better! But it's still hard. It's not "normal". He's not actually "healthy". So how do we proceed? No answers here, though it's probably just "day by day".
