The dawn of 2020 brings us close to the fourth anniversary of so many notable dates in Job's life. I can't believe that in three short months he'll turn four years old!
He continues to do well. So well, in fact, that Seth and I both left him for 48 hours to go on a snow retreat with our church youth group. I got to go two years ago, about two weeks before he started walking and we therefore realized he was in heart failure. The last two years have been so intense, medically speaking, that it just feels like such a big big deal that he's stable enough to be cared for by other people!! We had a great time and felt so refreshed after a little break from medications and childcare.
Job gets to go longer and longer between blood draws now too. This is so exciting to me!! We did weekly labs for almost three years, so I definitely feel a little odd going in so "infrequently" but I'm so glad for his sake. We'd been going monthly this last 6 months but after our next clinic visit we should be able to wait three months!
We absolutely love the phlebotomist at the South Sound Clinic who does his draws but we like seeing her less and less! He's had at least a thousand draws and no one else has ever had such a rapport with him or such relatively easy pokes!! That's one of the strangest things about Job's care. The more he stabilizes the less we see the people on his care team who have been so very important to us. I remember our pastor saying something about crying at the retirement of one of his son's specialists. At the time I think I was only pregnant with Job and I at least mentally rolled by eyes at such sentimentality. But I had no idea how much Job's providers would come to mean to me. If we continue to just talk phlebotomy, we have had many absolutely horrendous draws (or failed attempts!) so to find someone who isn't just skilled at her job but who is also just lovely to Job? It took us a good two years to find her and I don't ever want anyone else to ever draw his blood again. Of course it's a wonderful thing to not need the services of all of these people! That, of course, means Job is thriving! But it's also jarring.
Job does pretty well with his draws. He recognizes the building when we pull up and begins to beg me to turn around and go home, but as we talk through it yet again he can calm himself down pretty well. His big brothers are usually along and they are just such a help. While I'm checking in at the front desk they can just continue our spiel about why draws are important and what the steps are. Lately Job has even been filling in some of the steps himself. It's so strange (and frankly heartbreaking) to hear his little voice talk about doctors needing to test his blood to know how much medicine he needs.
Next month he (finally) gets his vocal cord nerve re-innervation!! I am sooo excited!
