2017 State of the Kid


Pardon the mucous, but I’ve just come down with my third cold of the season. I should be used to this,  first for having a suppressed immune system, and second for having a kid who attends Early Childhood classes* during flu season. But I am not. So I am taking as much D3 as I can get away with, in an attempt to placebo this cold into submission. If you need me, I will be the one in the corner with the drippy face, watching Chuck Norris choke out Christopher Lee. Cheeseball old movies are incredibly healing.

* specifically, a class with one of those parents that chuckles, “Boy, we are just having a devil of a time getting over these colds!” as their child snuggles up to yours.


2016 was a big year for E. He moved from South Dakota to Minnesota, from a house to an apartment to another house. Some stuff that has happened:

  • He started eating table food exclusively. Do not mention baby food or smooth purées to this guy!  He will have none of it.
  •  He started drinking from a cup. Note: he still cannot hold a cup, but that has not stopped him.
  • We started attending ECFE. I think it is doing him some good, though he does not seem super interested in the other kids yet.
  • He is babbling a bit more. Yesterday I definitely heard a “dada” from him.
  • With the move to Minnesota came access to loans of high quality equipment. He now can stand in a gait trainer.
  •  On the medical front, he started taking baclofen. We’ve definitely seen more slumpiness since that started. He will have Botox/Dysport injections in a few months. He will also have an EEG and neurology appointment at the Children’s Hospital.  So far we have been pretty impressed with his doctors.
  • He has started increased therapies in addition to birth to three. He now has PT twice a week, OT once a week, and speech once a week.  He also started music therapy, which seems kind of hit or miss at the moment.
  • He is getting so much better with other people. I can actually imagine a babysitting scenario where he does not cry the entire time!

I am trying to be hopeful, but not too hopeful.  Our physical medicine appointment was particularly frustrating,  not because of the quality of the service (it was great), but because they were very candid about E’s probable future  in ways that other doctors have refused to be. It was both sad and relieving at the same time.

What is that probable future? Well, of course, we don’t know for sure. But it’s likely to include care for the rest of his life. It’s likely to include lots of different kinds of equipment, for the rest of his life.  All we can do is make him work very hard every day and see if that helps, but some of those days definitely feel Sisyphean.  Or Atlas-ish if I have to make a sweet ass dinner as well. One day at a time, Norman Lear.

Great — now I have that theme song in my head.  Better that than the endless ticker of the Obamacare repeal, the return of my and E’s status as less than human (AKA people with pre-existing conditions), and no end to the healthcare fuckery in sight. But that’s a post for another day.


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