She might not be wearing pants, but she is very sophisticated.

We had an extremely long visit to the surgeon’s office on Monday. It was scheduled for a time that falls in the middle of Poodle’s nap, and girl likes her sleep, so I was prepared for drama, but you can’t really pick a time to see the surgeon on the, like, one day a week he’s in clinic. I let her sleep until the last possible second, scooped her up, put a barrette in her hair, and off we went. She has a little toy pug that she enjoys making out with in the car, to the extent that she moans with pleasure, so that’s fun/will be embarrassing for her later in life.

First up, an epic length spent in the waiting room and I neglected to bring toys. The barrette moved from her head to her mouth at some point. We were finally shuffled back to the examination room and were letting her eat a pen when the whole team comes in. We quickly grabbed the pen out of her mouth so they wouldn't judge us. Usually only her main surgeon comes in to see her, but this week it was him, her second surgeon (who I also call her foxy surgeon because he is A FOX), her (but really my) beloved nurse practitioner, and some other rando lady no one ever bothered to introduce. I could have asked, but…I didn’t care. Anyway, her surgeon says she’s healing pretty well, but the tissue surrounding her scars on the left side is still much more stiff than the right side was at this point, so we’re to keep massaging and massaging it. We can only massage her while she drinks her bottle because otherwise she IS NOT HAVING IT.

That’s the only good news we really got. The other news isn’t bad bad, like, we can see her face, we never thought we were done. But, in one appointment, we were informed of at least three upcoming surgeries, plus the beginning of the inevitable ECI process.

They are going to need to put more bone in her right orbital rim. It just isn’t setting up as well as they’d hoped. That’s one. She is missing about half of her palette. They will not be able to do the typical palate repair at 12 months like they do for most cleft babies, she doesn’t have nearly enough to work with. They will try to attack the hard palette when she’s 14-15 months. They can’t do it sooner without risking messing up her lip repair. That’s two. At some undetermined point after that they will tackle the soft palate, but that will be a mess. They have to get additional tissue from somewhere and connect arteries and vessels and other gross, hard stuff I don’t understand. That’s three.

Then there’s speech. The speech therapist at the clinic came in and talked with us about where S is at and what we should expect. Most of our English sounds require the soft palate to put in some effort, and she doesn’t have one of those, so we would never expect her to be able to say “p” or “t”, what have you. But, she should be able to say “h” sounds and “w” sounds and “y” sounds and even “m.” The therapist had a list of sounds and words we should be hearing her say, and, she doesn’t say them. Her noises are consonant-less. Sometimes you can hear her say a “yeah”-esque sound, sometimes something that’s vaguely “hi”-ish, but that’s it. So, the speech therapist sent in the social worker. The social worker talked with us about where S is at on a variety of milestones (eating and crawling are still issues) and sent us off to enjoy the splendor of the ECI merry-go-round.

ECI is early childhood intervention. The state contracts with various providers to provide special kids with special services, speech, physical, occupational, etc. Sometimes the state pays, sometimes they bill your insurance, sometimes a purple unicorn pays in bitcoins, it’s a lot of hassle. I luckily have some very good friends who have dealt with the whole thing and are already talking me through it.

Let me say this. I am a crier and a feeler of feels. With every new professional coming in and telling us about a new issue we must handle, I got closer and closer to public crying. I try to keep it in check because I never want S to ever feel like she’s making me upset or like she needs to be strong for me or any other parental emotional vampire crap. But, I finally let it out after the appointment. I barely understand how to take care of a baby as is. But multiple surgeries in a year? Countless appointments? I work full-time. I like sleep. I have a dog who won’t go outside in the rain, I have a lot going on! But, I come home every day to a goofball who has fun everywhere she goes and charms most people she meets. One old lady at a McDonalds in Giddings threatened to steal her this weekend. Our life is just our life. We will survive hospital stays and get to appointments on time. S will hopefully continue to smile and want to hug every new doctor that comes in, even if I want to run screaming. I will cry sometimes and she can just laugh at me if she wants.