Full of Firsts

Yesterday was a really big day, granted, most days during the week are pretty big around here.  We’ve finally got our schedule locked down, our old OT is back with us two times a week at home, and the days are just packed.  I seriously have to keep explaining to the therapists if they give me one more thing to do with Aleck while he’s not in a therapy session, which isn’t often, they are going to have find me extra hours.  For example, we are looking at increasing his time in his elbow splint from thirty minutes a day to forty-five, eventually one hour a day.  Well, if we do that then we really won’t have time to fit the batsuit into his day if we are still squeezing in an hour in the stander.  I almost find myself wishing he didn’t need to nap just so that I wouldn’t feel so rushed and so that I could get it all in, because when I don’t I’m beating myself up about it.  There just aren’t enough awake hours that don’t involve negotiating a bottle down his throat, his three meals a day, his nap, plus his therapy sessions to fit in an hour in the stander, an hour in the batsuit and an hour in his elbow splint.  I mean, he’s not even two yet!  When his PT at home was on vacation last week I actually got to practice some of the skills they’ve been working on with Aleck and it was a lot of fun.  When he was younger I was practicing with him everyday, multiple times a day.  Now I’m lucky to work on any of his new skills during the day and of course I worry he’s not going to retain it all from one week to the next.  But everyone assures me he’s making huge progress, his standing is looking great, his elbows are loosening up, and I must be doing something right.  Well I must, because yesterday was a huge day.

During OT downtown in the morning we went through our usual routine of putting Aleck in tummy time, which he hates, and his OT distracting him while I hold him into position.  Lately we’ve noticed that he’s engaging in more active movements while in this position, which is terrific, and I’ve figured out how to incorporate a modified version of tummy time in between sips of bottle to help get burps out and to reinforce this position in his everyday activities.  Normally I have to practically sit on him to keep him from rolling over or at least keep a hand on his left hip to steady him.  Today, I was able to walk around to the front and take video of this amazing tummy time session.  While playing with the shaving cream and bugs we started playing with words because Aleck loves words, especially when he can act them out like “Up” and “Down” or “On” and “Off”.  During his session we started playing with “Low” and “High” and low and behold, Aleck puts his head down on his left arm.  This is huge.  This is so huge I almost started to cry.  Aleck has never gotten his hand or arm anywhere near his face or mouth and here he is resting his head on his arm, on his hand, even mouthing his arm at times.  His OT and I were doing dances of joy.

What’s so important about this movement, this connection, is that it leads to self-feeding, something he’s not really shown much of an interest in.  Aleck likes eating food off of plates and containers if I bring them to his mouth, but he’s been fighting hard the idea of even just holding a cookie and bringing his mouth to his hand if not the other way around, until today.  So we quickly cleaned up the bugs and shaving cream, washed off the board and I pulled the teething cookies out of the diaper bag.  With a little help from his OT, he’s holding and eating a cookie.  He’s relaxed, he’s going at his own pace, and he’s pretty happy with the whole situation.  If he can gradually become more comfortable with putting his arms in front of him while he’s on his tummy he can stretch out his arms, his elbows, his wrists, his fingers, his shoulders.  If he can put his arms in front of him he could crawl which would mean putting weight on his arms, using them to hold himself.  This skill can transition him to pushing himself into a seated position from lying down, pulling himself up to a standing position, being able to hold onto something so he can walk, and even catching himself with his hands and arms if he falls.  He actually did catch himself over the weekend, he was sitting on our friends’ plastic picnic table and his tushy slid under the table.  As Craig ran to grab him we saw that his hands were actually still hanging onto the table part while the rest of him was underneath.  Aleck wasn’t in any pain though he was definitely startled and letting us know he wasn’t too happy.  I however, was super excited to see his body react like that.  Kids with AMC are known for not being able to put their arms out to catch themselves when they fall, many don’t have that reflex and until this moment we thought Aleck was one of them.  I honestly never thought that would happen in his lifetime, yet alone before the age of two.  It’s a huge sign of how far he’s come and the good things that are right around the corner.

And of course the idea that he could feed himself would be amazing.  Now I know parents telling me about how their two year olds still need their parents to bring the spoons to their mouths with food, yada, yada, yada.  I’m really more concerned about snack time.  Think about when your toddlers eat snacks.  In the car, while you are driving, in the cart while you are shopping, in the zoo while you are walking around looking at all the animals.  Now imagine that in order to give your child a snack of any kind you have to stop everything and hold the goldfish as he takes three bites to eat the whole thing.  Now add in Aleck’s therapy schedule to that program.  He’s lucky if he gets 3 goldfish a week.  And of course, I feel guilty that I’m not spending more time feeding them to him, but we just don’t have that time.  If he can learn to feed himself snacks I think he’s going to be more excited about food in general which would be a huge releif.

So this blog post is already over 1000 words long and I haven’t even come to the best part of the day.  In PT at home yesterday Aleck stood up without being held or leaning against anything.  He was put into the standing up position but he was able to balance and maintain it while Ali sang the alphabet.  This time I really cried.  I don’t even have to say what’s important about this moment or why the tears were flowing. The first time he did it I was in the other room so Ali called me in and I grabbed the camera.  On the video he doesn’t quite get it the first time but the second time looked like a success to me.    After I stopped recording we had a big hug, all three of us, in the living room.  I love you Ali!!!

With all of Aleck’s care we’ve been taking baby steps and I try really hard not to get ahead of myself.  I try not to imagine what Aleck’s life will look like in the future.  Not a few months down the road, not a year down the road, and I certainly don’t imagine him in High School.  I don’t want to set up expectations that are too high and at the same time I don’t want to feel depressed thinking of him trying to navigate a large high school with a gait trainer and an aid for the bathroom.  That just doesn’t make my days happy.  Yesterday was a real glimpse into the idea that Aleck could be upright and moving on his own way before his first shave.  But still, I don’t want to daydream too much, instead simply celebrate yesterday’s huge accomplishments and get ready for what the next day brings.