Wow wow wow! Job stood up completely independently!
He's 22 months old, about to turn 23 months, and I really didn't think we'd hit this milestone before two years old. Ahhhhhhh!!!!
Monday, January 29, 2018
Job Stood Up!
Wow wow wow! Job stood up completely independently!
He's 22 months old, about to turn 23 months, and I really didn't think we'd hit this milestone before two years old. Ahhhhhhh!!!!
Saturday, January 27, 2018
December Recap
December was a rough month for Job. He had several little colds and while they didn't send him to the hospital like they would have last year, he was still uncomfortable and unhappy.
Job also got incredibly frustrated by his communication difficulties and our inability to understand him accurately (and quickly!).
Put together, these two issues manifested (through the middle of December throught the middle of January) in the grumpiest attitude I have ever seen Job exhibit. It was like living with a stranger! He was almost constantly angry at our feeble attempts to follow his requests and if he wasn't angry, he just didn't feel well.
This last week has shown such a stark contrast in his demeanor: he is back to his cheerful, contented, interactive little self.
The first week of January I started making some waves to get Job into a more intensive track for Speech Therapy. That's a whole other post that I will write soon, but he is now in weekly SLT and I'm really excited about our plan.
In addition to the facts that he now feels better and we're now communicating a bit better, Job also hit a new "ability spurt".
I'm making that phrase up, I suppose, to try to describe a very pronounced phenomenon that we see regularly in Job... at least after the fact.
This is the new area of research for CHD kids that I am so excited about and desperate for: how does Job's constantly inadequate oxygenation affect his physical and cognitive development?
The theory (that I absolutely believe to be true for Job) is that this inadequate oxygenation impacts cognitive function, especially in the area of executive function. This has been studied in patients on ECMO (a heart lung machine that temporarily keeps these organs working for critically ill patients as they recover from a trauma), but hasn't really been studied for kids who live on low oxygen usually (like Job who is at best getting 75% of the oxygen we with typical circulations get into our blood flow).
Job can really only work on one skill at a time. We've seen this so many times, but I always forget again as he's working on the next skill. If he's learning to take steps, he can't communicate. Well, he learned how to take steps in October and lost a huge chunk of his verbal/non communication. Once he was somewhat steady on his feet, he did gain back a few words and so I mentally checked off that "ability spurt" because he was again making sounds and he was still taking steps. Great! Done with that single focus on steps and back to talking.
But it has become so clear in the last two weeks that he was still working so hard on gaining confidence in his ability to take steps that he still just couldn't communicate well. He couldn't coordinate his body and brain and mouth to cruise around on furniture with confidence AND be receptive to our efforts to help him communicate. He couldn't try any new signs or words or sounds or gain back what he had known before. It was too much for his brain to process all at once.
I was so frustrated and worried that he refused to mimic us or work with us on anything to aid his communication even though he was so annoyed (and therefore should be motivated)! I think we have picked up more tools for how we communicate with him, as we've strategized with his various therapists or a few friends who have experience in this area. I think he's just gotten older and learned more. But there is an ability to participate now that there just wasn't a month ago, two months ago.
It's exciting to see Job be so much more receptive to working with us. But really, he's most interested in mimicking his big brothers again. 'Oh, Isaac is doing something? I want to do it!' They are my best helpers to help Job. Here's an example I recorded yesterday, of Job learning to sign "please":https://youtu.be/zHsXldeCXBg
Job also got incredibly frustrated by his communication difficulties and our inability to understand him accurately (and quickly!).
Put together, these two issues manifested (through the middle of December throught the middle of January) in the grumpiest attitude I have ever seen Job exhibit. It was like living with a stranger! He was almost constantly angry at our feeble attempts to follow his requests and if he wasn't angry, he just didn't feel well.
This last week has shown such a stark contrast in his demeanor: he is back to his cheerful, contented, interactive little self.
The first week of January I started making some waves to get Job into a more intensive track for Speech Therapy. That's a whole other post that I will write soon, but he is now in weekly SLT and I'm really excited about our plan.
In addition to the facts that he now feels better and we're now communicating a bit better, Job also hit a new "ability spurt".
I'm making that phrase up, I suppose, to try to describe a very pronounced phenomenon that we see regularly in Job... at least after the fact.
This is the new area of research for CHD kids that I am so excited about and desperate for: how does Job's constantly inadequate oxygenation affect his physical and cognitive development?
The theory (that I absolutely believe to be true for Job) is that this inadequate oxygenation impacts cognitive function, especially in the area of executive function. This has been studied in patients on ECMO (a heart lung machine that temporarily keeps these organs working for critically ill patients as they recover from a trauma), but hasn't really been studied for kids who live on low oxygen usually (like Job who is at best getting 75% of the oxygen we with typical circulations get into our blood flow).
Job can really only work on one skill at a time. We've seen this so many times, but I always forget again as he's working on the next skill. If he's learning to take steps, he can't communicate. Well, he learned how to take steps in October and lost a huge chunk of his verbal/non communication. Once he was somewhat steady on his feet, he did gain back a few words and so I mentally checked off that "ability spurt" because he was again making sounds and he was still taking steps. Great! Done with that single focus on steps and back to talking.
But it has become so clear in the last two weeks that he was still working so hard on gaining confidence in his ability to take steps that he still just couldn't communicate well. He couldn't coordinate his body and brain and mouth to cruise around on furniture with confidence AND be receptive to our efforts to help him communicate. He couldn't try any new signs or words or sounds or gain back what he had known before. It was too much for his brain to process all at once.
I was so frustrated and worried that he refused to mimic us or work with us on anything to aid his communication even though he was so annoyed (and therefore should be motivated)! I think we have picked up more tools for how we communicate with him, as we've strategized with his various therapists or a few friends who have experience in this area. I think he's just gotten older and learned more. But there is an ability to participate now that there just wasn't a month ago, two months ago.
It's exciting to see Job be so much more receptive to working with us. But really, he's most interested in mimicking his big brothers again. 'Oh, Isaac is doing something? I want to do it!' They are my best helpers to help Job. Here's an example I recorded yesterday, of Job learning to sign "please":https://youtu.be/zHsXldeCXBg
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