Sitting on the floor of the ENT waiting room because we are attempting to hide the fact that she is eating.

Short story: It's still completely insane!

Long story: She doesn't care that it's insane. She now eats table food. When something gets caught in her cleft, she taught herself to grab the water cup to wash it down. We don't have anymore meltdowns. Kids are shockingly adaptable.

She is off bottles completely. We knew she had to be off of them by her surgery date. The nipple would harm the surgeon's work. Can't have that. I searched the internet for advice. The internet was worthless. None of my friends have had to get a kid off bottles so early. Even the advice for cleft parents was just not right for us. She didn't take bottles when other babies seemed to take their bottles. My big plan then was just to ignore the problem and hope that everything worked out on its own.

My dad, who takes care of S during the day, thought that we should have an actual plan. So we asked her case manager about what she has seen other parents do. She just asked us, "How OK are you with crying?" In her experience, you can try any number of transition measures, but that with those, ultimately the process would just be stressful and prolonged and largely unsuccessful. She suggested a cold turkey switch from bottle to cup. My dad is always game for anything, so we tried it. It worked. If anyone would like to know more about how we did this, there were a couple tweaks to her schedule, let me know.

She uses this spoutless sippy cup. It's from a list of acceptable cups that her surgeon gave us. No straws, which she couldn't use anyway, and only very short spouts are allowed. We went hardcore because why not.

Her first palate repair surgery is on September 9. I will try to explain what the hell they're going to be doing. Through her distraction, they pushed three disparate pieces of upper jaw into one recognizable gumline. She has no roof to her mouth, her only existing palate tissue is sort of an extended rim along her gums, all the way to the back, beyond where the molars are.

Her surgeon, who we fully recognize is making this up as he goes along, originally told us that he probably wouldn't touch her palate until she was older, that they would insert an appliance in there in the meantime. But then he had an epiphany. He told us that her palate is very similar to the palates of kids with Pierre-Robin syndrome. Some of those kiddos have oversized tongues that push their palates open wide. So, he is going to do on S what he does with those kids. Which, I THINK, is to remove the palate tissue from the back of the jaw, push it into the middle of the roof of her mouth and join it with the palate tissue in the front of the jaw. Like, fold in the ends of her V-shaped palate to make a full, but short palate in the front. He drew us a picture. That I didn't understand at all.

He told us that this is just the first step. The palate will be short, there will still be way too much space between the end of the palate and the back of the throat. The second stage of this repair will be another surgery to elongate it. I don't even know about that.

D and I obviously do not understand every detail of her surgery, we have to and do trust her doctors. Her anatomy is unique. Few people have ever had two Tessier 4 clefts. And even those people don't always have an obliterated palate. Her surgeon has never worked on a kid like her. The surgeries he's done so far have been mostly his inventions. And to us, that's OK. He's a little gruff. He talks really fast. He uses terms he should know we don't even recognize, let alone comprehend. He always seems like he's rushing around. He often comes into the examination room with a posse. some members of which we've never seen before. But, he is one of the only doctors who pronounces her name correctly. He calls her "princess." When he examines her, he jumps right up onto the bed with her. He is brutally honest. I hope he never leaves Austin.