Emotional Needs

They tell new parents to narrate what you're doing whenever interacting with your new baby. Even though initially, they don't understand your words, eventually they will. And this constant narration serves a couple of purposes. It helps develop vocabulary, it helps them learn what is going to happen, and this helps them learn to trust you.

Over time, as it became apparent that Cyrus is likely to remain non verbal, I kind've let this habit slide. It's just hard when you don't get any response or social engagement. And part of me thinks, I should still keep up the practice because he probably does understand more than he is able to communicate that he does, and those benefits are still the same even if they are slower to develop. But interestingly enough, whenever we had company or were just in front of others I found myself narrating constantly! Every diaper change, what we're eating, that it's time for medicine, the expressions I see on his face, etc.

But why?!

Is it just like I'm trying to look like a "good" mom in front of others? Do I feel some compulsion to impress? I mean... maybe??? I definitely wouldn't discount it completely, and yet that explanation doesn't completely resonate.

During a hospital visit, after we had decided a treatment plan, the pediatrician turned to Cyrus and explained what they were going to do to him.

I told the doctor that he didn't really need to do this. That Cyrus didn't understand.

He gave me a soft sincere smile. "That's okay. I'm going to explain it to him anyway."

I felt immensely pleased at this response because this doctor saw Cyrus, recognized him as a person with thoughts and feelings, who deserved his respect.

I realized at some later point that same week, that when I was narrating in front of others it was a way to include Cyrus in the social interaction. I was doing it because I wanted our guests to see him! It was like I wasn't doing it to explain to Cyrus what was happening, but rather a way to give him a voice - to share his experiences with others.

And it works! Others will turn to him, ask follow up questions - engage with him more than when I don't do this.

But then, why don't I do it the rest of the time? When it's just the two of us? I still want him to be seen and included.

It's almost like I'm so used to serving as Cyrus's voice, that I forget he has one of his own.

That just because he cannot articulate his thoughts and feelings, doesn't mean he doesn't have them.

I was reflecting on our bedtime routine at one point. We go through the process, I lay him down in the crib, tuck the blanket around him, and walk away. On one particular evening, he immediately objected as I started to leave with one of his five distinct sounds that I think I can interpret.

I came back, put my hand on his chest, and told him it was time to sleep and time to dream. I stayed for just a moment, and he instantly calmed.

Huh!

It's almost like all he wanted was for me to say goodnight.

It was a good reminder. Cyrus may not always be able to articulate his wants and needs. But he is still human. A human with social and emotional needs. I'm trying to get better at learning how to meet them.

What happens when you brush a curly haired child's hair.

General Update: 

The last three weeks or so have been rough for Cyrus as previously mentioned. He had a cold a while back, and since that time his sinuses have not really cleared up completely. He seems to be struggling with intermittent congestion and it sounds like so much of the nasal discharge just gets caught in his throat. Kyle and I have both been experiencing a little mucus as well, and I can't help but wonder if there's something here in this hotel that we are all reacting to.

He had three doctor's visits this week with various specialists. First, a pulmonologist who confirmed that his lungs are clear (yay!), just that his sinuses have remained clogged. He saw no sign of infection and recommended we get a suction machine to help him clear things out when he is not able to do it himself. He also concluded that Cyrus's sleep apnea has diminished so much according to his last sleep study, that he no longer needs oxygen at night!

Then we met with GI to discuss volume intolerance. They suggested that Cyrus needs more water more often, and that perhaps his current formula has too much fiber in it, which is slowing it down through his digestive track, and when we try to feed him more he gets backed up. The water should help, and we are also considering changing to a different formula. Of course, the sample the dietician sent us home with does not actually appear to be lactose free, so I've been trying to reach them about this, but haven't heard back yet. I'm happy to say though, that just with the additional water we have been able to titrate his daily food intake from 700 calories a day to about 825 without any single vomiting, or even spitting up, incidents over the last three days. Our goal is to get him in the 900-1000 calorie range. But we're going slowly (don't want to get kicked out of school again for vomiting).

And finally, we met with the surgery team to check out how well Cyrus is healing from his surgery this past July. We were also supposed to learn how to change his g-tube button, but since we accidentally ripped it out a week ago, we apparently are now considered experts that already know how to do this. They cauterized his granulated tissue for a fourth time, and with the help of some steroid cream we seem to be keeping the granulation mostly under control. They gave us some extra g-tube buttons and syringes since we don't have access to our other extra supplies that we left at home  thinking we'd only be in this hotel for a week or two. Ha! We're now starting out week six! Hopefully, we'll get to go home on October 20th.

Meanwhile, we going to get out of this space and spend the weekend with friends who like, live in houses. Maybe make some gluten free cookies that this pregnant lady has been craving for weeks!

We probably should find time for a hair cut at some point...