Slow Motion Changes

It’s a strange sensation to watch your child develop in slow motion. Every new skill gained is not just exciting, but so…noticeable. Some parents say things like, “Oh, he just suddenly started crawling” or “she seemed to walk overnight.” Not in our world. It’s kind of fascinating, really, when it gets broken down into bits and pieces — often with the help of a physical therapist trying to explain it to you. How many parents actually notice the first time their kid reflexively throws their hands behind them so they don’t fall backwards from sitting, and even if they do, do they realize how significant that is? Connor isn’t quite crawling, but I’m watching each step along the way. Every new positioning of his legs and body. If you have a typically developing child, did you give it much thought the first time they got into a side sitting position? Because that’s a really big deal, too. What about when they were sitting and playing and pivoted in another direction? The first time they passed an object from one hand to another? Used the pincer grasp? Banged two objects together? Maybe you were excited by the first mamama, but were you just as excited when you finally heard bababa?

The last several weeks have been incredible. Connor used to hit milestones with a lot of lag time in between. And when it seemed like he was about to hit one, it would take forever to  actually happen. There was that quick head lift that made me think he was on the verge of having head control, but that took several more weeks. There was the first time not completely flopping over from sitting, but it was months before he mastered it. But we have had a lot of firsts recently, followed by quick mastery. He threw his hands forward to catch himself from falling forward in PT, he rolled to his belly finally (that was just a stubborn thing-he actually rolled the other way on time) and realized rolling could actually serve the purpose of locomotion, he became mobile, he started using consonants, he can pull himself into a sitting position without help, his interest in what is going on around him has quadrupled and he fell in love with Elmo. He started comfortably sitting in the grocery store cart and observably recognizing certain words.

He’s doing really well despite an uptick in recent seizure activity. But he’s also had recent med changes in the weaning of vigabatrin and adding trileptal, so I’m remaining optimistic about that improving. They don’t seems to have a lingering affect, though they have morphed in appearance the last few days. He was having what were suspected to be complex partials in which his body would clench up and he’d stare off to the side unaware. Now they start with him losing awareness briefly and he clenches up, but then he regains awareness and is responsive while his mouth twitches like crazy. It’s like a weird mix of complex partial and simple partial. But what they they truly are remains to be seen.

And the remolding helmet only needs to be worn at night now now!

Through it all, he’s happy and giggly. Well, except for the week from hell with those two teeth coming in. They still aren’t out, but he seems to have settled down. I will go in and get them myself if they start up with him again. I don’t do no sleep.

Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Whoever that kids is, he is awesome!
Whoever that kids is, he is awesome!
Now that the carpet is sufficiently full of milk, I'd like to replace it.
Now that the carpet is sufficiently full of milk, I’d like to replace it.
How long do I have until mommy starts making rules about TV?
How long do I have until mommy starts making rules about TV?
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8 thoughts on “Slow Motion Changes”

  1. My son is 6 months old with TSC and I ask myself this question all the time. Do other mothers watch their children and notice the little things like we do? Love your blog and reading about all of your adventures!

  2. We noticed a huge gain in development speed when we weaned Savanna off Sabril, which was a great drug for her. She is now on Trileptal too, and the effects so far seem pretty benign. Teething caused significant complex partial seizure activity in Savanna. Ativan and Onfi to get through those periods prior to her second resection.

    Just as you describe, me the parent of 2 typical kids prior to our twins, never ‘really noticed’ the milestones in their development. We took pictures and video, but it was all expected. Maybe too, Savanna’s situation is so dramatic that we went through a paradigm shift as parents. Now, each milestone is an amalgamation of isolated, trained movements, that seem to take forever for her to learn or learn to put together. So I notice, and celebrate when she gets it. Even more effort goes into cognitive and speech milestones and they come slower still. One day at a time.

    I am so glad to hear Connor is experiencing an increased development pace and the seizure activity isn’t too disruptive.

    Thanks for the updates,
    -ken

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