His heart is so stable and we're just thrilled. We don't have to see cardiology until he has his annual biopsy in September! September!! That's two whole months between cardiac appointments! What is this?
The only other time we tried to go two months between appointments was back in January 2018, but we only made it a month because as soon as he started walking we knew something was wrong and indeed, he was in heart failure.
The main focus this summer is speech therapy and helping Job advance his expressive language capabilities. Weekly speech therapy has been very helpful but we're also working with Pulmonology and Otolaryngology to try to optimize his lung and throat capabilities before we hit cold and flu season.
His vocal cord gel injection back in June helped a great deal - he can now speak with more volume and perhaps a bit more clarity, he can now swallow safely although still on very thick fluids, he can move his body
We haven't hit any of his "transplant" anniversaries yet but we keep marveling that he can do xyz "summer thing" this summer because last summer he was declining so rapidly. We're just starting to write a letter to our donor family because we can send it to them in October, at the year mark. But how do you write such a letter?
We're well aware that this transplant won't last Job's whole life. It may not even last through his teens! We're well aware that he will continue to have many doctors appointments and he will always be on medications and he will need therapies for many more years. As he runs (he runs!!) and plays this summer and everyone around us is (rightly!) excited about his very good health, I struggle to know how to hold these things in tension. My excitement and oh such deep joy that he is still here for me to hold and play with is tempered by my awareness that this gift has come at great cost to our donor's family (and to our family).
