May 2019 Update

Job is really enjoying his newfound energy and stamina. It's awe-inspiring to watch him walk from our car to one of his brother's baseball games, play while he watches said game, and then walk back to the car. We carry him sometimes, but for safety or convenience or cuddles, not because he *cannot* propel himself forward.

His cares and med list are still long and exhausting. We still have many upcoming appointments and procedures. We've never experienced that fabled time of stability and rest and growth that doctors keep telling us exists. But I think that's always going to be our life with Job. Last summer one of the ways I tried to convince myself that Job needing a new heart wasn't horrible was to imagine how easy life would be without HLHS and the imminent threat of death. Now death seems less imminent because Job is very stable from a cardiac perspective. But everything else is hard in different ways and I'm learning to give up some of my misplaced hopes and expectations.

It's a weird place to be: we're so dearly grateful for the mercies we have experienced but we're still grieving a great deal of loss and trauma.

The greatest frustration right now is that it has been three months since Job's vocal cord gel injections stopped working. His surgery to re-inject the gel and do some other vocal cord work and do a number of lung assessments has been bumped. This is our fourth time rescheduling it, because Job was sick or because they had kids needing surgery more emergently. We hope they'll have an opening soon because Job's abilities to breathe, eat, drink and talk are all so affected by his broken vocal cords. It is beautiful that he is functioning as well as he is right now, that we're not the ones bumping someone else from their surgery because we need this surgery today! But it's also sad and frustrating.