Sometimes you gotta just go with it

There are days I am amazed at Evan's progress. And then there are others that not only do we see no progress, it's like we took a step back.
I suppose this is typical for any baby/ toddler. It just seems amplified in our situation because progress is so important for Evan.

Having him home is a wonder. At the end of the day (especially the more frustrating days), I still realize he's made a ton of progress in the almost 2 months we've been home. And the time has just flown by.

Still, it's sometimes hard to keep pushing and pushing every day for progress. It wears us all down.
I sometimes take a moment to sit back and contemplate what I very rarely allow myself to think about: what a "normal" 9-10 month old would be doing now.
It's a tough exercise. I immerse myself so much in our daily routines and goals that I sometimes forget where we WOULD have been at this stage, without the multiple complications to Evan's development.
Still, it's necessary to think about it, because it sets the bar higher and higher as we manage to make progress.
He's sitting up well, and grabbing toys, but we still have trouble with him trying sit on his own without propping up on his hands or something else.
He's rolling, and pushing up on his arms, even trying to rock when I set him into a crawling position. But he's still easily frustrated with it.
He eats a few spoonfuls some days like champ, enjoying his baby food and making huge strides. Other days, he vomits it back up, or flat out refuses to eat anything.
There are days that he is on the speaking valve for hours (spaced out through the day) with few issues, and others it's a struggle to have him on for 40 minutes total, even trying 3 times in a day.
I do my best to recognize his cues, to find some sort of reason why he's more tolerant some days, while others are more complicated. I track the amount of time and quality of his sleep, his feeds, all activities, playtime, diapers, temperatures morning and evening, baths, time spent on the speaking valve, or trying to eat, physical therapy, etc on an app for my phone- and I am meticulous in using it. I note changes in behavior, when I suspect a tooth to be coming in, how he reacts to things..... Everything I can think of to make it easier to identify what sort of routine works best in order to make progress steadily.

And at the end of the hardest days, I'm left with one conclusion: Sometimes you just gotta go with it.
I can't compare Evan's progress with the typical 9-10 month old. He isn't. And it's not fair to him or myself to try. Evan has his own way of doing things. He's a force unto himself. With all the progress he's made over all this time, I only take credit for 25% of it. Because he does best when you show him something, some exercise or action, and allow him to initiate it after that on his own. I can keep trying and trying to gently force progress, or I can go with the flow, and let him tell me when he's ready to try something new.
It seems like a simple thing. I guess sometimes, it's hard to see the simple things, when everything has been so complicated for so long.

Progress report

Evan is doing great- physical therapy is going well... He's even starting to enjoy playing on his tummy and getting to get up on his hands and knees (with Mommas help, of course). Today he did a double roll all on his own (back to belly, then belly to back), and then pushed up to look around while he was on his belly. He had a good time with it.

He's taking some food by mouth, but still fighting me on it on some days. We just keep trying. We've been trying 2-3 meals a day, and usually he will take about 3 spoonfuls every meal. And we've been doing most feedings while he has his speaking valve on so he can taste better. He seems to really enjoy sweet potatoes, bananas and applesauce. Come to think of it, I like them too!

Grabby hands

I love that Evan has progressed enough to want to grab anything in his sight and play with it. Really I am.
I tell myself this at least 20 times a day, because otherwise I might be pulling my hair out.
It's not such a problem when you've got a baby with no tubes attached to them. You can make sure whatever is within their reach is baby safe. And barring that, you grab the not so baby safe stuff and hurl it across the room to get it out of their reach.

BUT.... In Evan's case, we've got a feeding tube and oxygen attached to him. Both of these things are wonderful play toys to him, and he just about gives me fits when he gets a death grip on his feeding tube and pulls upward, causing the g-button tube that is supposed to be inside to become exposed. Now, the g-button has a balloon keeping it placed in his stomach, but I still freak a little when he does this, since both his stomach and skin are fairly elastic, and I have images of it popping out dancing in my head.

It's not that it's a major emergency if this happens. But I still worry about it. I also worry about him getting a good grip on the trach and pulling it out just enough slip out. The trach ties make this less of a possibility, though, and I'm familiar and comfortable enough with the trach that I don't worry about that as much. Just 10 times a day, as opposed to the 20 times a day I worry about the g-button coming out.

I love being a mother, and having all these things to worry about on top of the usual motherly worries doesn't change that fact. It doesn't matter how grabby those sweet little hands get, or how fussy he is over teething. Or that he decides to throw a party in his room three nights a week from 2 AM to 3:30, and then naps in short 30 minute bursts the next day so that there is no way I can nap with him.

Nope, all that is A-okay with me, because I get to do all the cool, fun stuff with him, like seeing him discover his feet, and find out that he can make popping sounds with his lips. I get to see him smile so many times in a day, and see all that progress that we've worked so hard for.
He's amazing, and I am so lucky to be his Momma.