We'll be going in yearly for these assessments because of his condition, but especially because of his various complications (like his cardiac arrest and rough recoveries). It is so good to have so many people checking in on him. And it is good to be at a place in history where there are enough surgical and medical options to keep HLHS kids alive with enough reliability that care for them is now beginning to look at now improving quality of life - this wasn't a luxury available 10 years ago, let alone 20.
While numbers still have to be crunched and reports still have to be written, the assessments went well. Job scored really low on his gross motor skills, high on his fine motor skills, medium-low on both his receptive and expressive language skills and really high on his cognitive skills. We're so thankful! This assessment fits well with what we and his various therapists and doctors have observed and theorized, but now it's official.
But. Job has some significant hearing loss because of middle ear fluid. We don't know for sure how long this has been a problem or why. There are lots of possible reasons it happened and lots of possible reasons it wasn't noticed until this morning. It should be temporary, but it sounds like we will definitely be adding a lot of ENT appointments into our schedule with the likelihood of ear tube placement this summer.
The news feels like a punch in the gut. Another compromised system. Another long road of doctor appointments and a likely surgery. We're so very sad for Job! Comparatively this isn't that big of a deal, I suppose. But it just feels hard today.
Sometimes I wish we would just get good news or just get bad news at each appointment. It's harder to figure out how to react after an appointment like today's - even though ear tubes aren't necessarily a big deal. It's more the culmination? (But feel free to tell me your happy successful middle ear fluid draining stories.)
Joy and pain, always intermingled.
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