OCTOBER 1, 2019
Just like every year, it is time to dust off the keyboard and delve into the life of one pretty extra special kid and all the humans and fur babies that make up the circle of his life. I'm taking all with me on this journey that choose to hitch their readership for the month to me and this jumble of words, ideas and emotions that all mix together and try coming out in an ordered semblance of stories, essays - verse that tries to explain this life that I call mine. For his part, Bradley is just as cute as he has always been and just as surprising...amazing us, just as we were promised, often daily.
It's been quite a year for Bradley. He is trying to tackle this speech thing with both arms wide open and though we aren't getting a lot of uninitiated language - he has a lot to say when prompted. He also has a Speech iPad, and that is going very well, since it turns out that Bradley is quite the master at all things iPad. He truly impresses and frightens me with all he can do with it and all he can make it do for him. When he isn't trying to learn to communicate with that one, he is on his own iPad, and he still loves to watch Pitch Perfect, only now we are hearing him try to mimic the words, even anticipating what is coming next. He also does this with some other little kid nursery rhymes and recently has returned to his first loves of The Wiggles and Sofia the First - we hear lots of words when he watches those, it's pretty cool!
There are still so many areas of things that I just don't know or understand when it comes to Bradley. I don't have a lot of answers about his behaviors, the reasons or the answers to stop some things and encourage others. I don't have many answers when it comes to his health, I know that he is gaining weight and getting taller so I see him growing and that is everything right now. I hear from his docs that they are quite happy with his progress and the dietitian at his appointment today didn't try to push more Pediasure per day or another type of product with more calories...so I know that he is making the GI happy. A little less stress each day as I keep trying to keep count of all the calories going in and deducting how many didn't go in and how much we need to make up that night or the next day... but at least I know that something I am doing is working. Bradley is thriving and growing. That being said there is no reducing any of his caloric intake at all, this little guy needs all he can get. On a typical Boys chart, Bradley is 5 percentile - for height and weight. On a Boys chart for Down syndrome, he is just below 50 percentile. Whichever chart you choose to look at, he is doing great!
He still struggles with behavior stuff - he’s that kid that will ignore the good behaviors around him and pick up that one bad behavior he sees and copy it. So school is always up and down: good one day and bad the next. Often both in one day, even within hours to moments of each other. It can make opening his communication book a constant quagmire of nerves. The issue is, by the time I know - he doesn’t anymore. Talking to him about it is often a hit or miss situation, I keep his IPad from him and he seems to understand something is not right, but not what... but he sure will work on cleaning up his toys til mom decides she's happy. An odd dance of progress I suppose.
What I do know is that this little boy adores his dad, and loves his mom; but would trade her for a popsicle cause he really loves those. I know that his sisters’ very busy lives make him miss them desperately. He may prefer watching his movie to actually watching them play volleyball - but everyday, he tries to ask if we’re going. He asks a lot, cause we go a lot! But that is it’s own kind of progress too.
We live busy lives and it’s hard to keep up sometimes, but for the next month I’ll be here every day sharing a little bit about this life we lead. I invite you to come along.
31 Blogs for 31 Days to Celebrate Awareness and Acceptance of Down Syndrome: Trisomy 21.
Blessings on you all and see you tomorrow!
No comments:
Post a Comment