All in good time

When you want something to happen so badly, it seems to take forever.  Your patience is tested, as well as your ability to just be present in the moment.  Luke has taught me a lot about that.  We've been working on getting him to clap for several months now.  We've also started working on some basic signs with him; a mode of communication that will be very important for him and for us going forward.  In the past couple of weeks, he's been clapping up a storm and signing "more" with much pride.  They both look the same, but he does them in the correct context, so we're gonna give him credit for both!  Instead of focusing on the next milestone, I'm just basking in the joy of his new skill.  The novelty of it has yet to wear off on me!  We're seeing the magic of having that twin companion, as he watches Olivia clapping with such a keen eye.  You can tell he takes it in, thinks about it, then works his darndest to follow what she's doing.

Notice how proud he is is of himself!

He's sitting like a champ these days and is working on crawling.  It's not easy for him, especially with his G-tube button on his stomach, but he's trying.  There are still days when I forget to just be in the moment; when I have to remind myself of how far he's come in the last year.  I know he'll catch up to his sister eventually, and I have this feeling he'll take off crawling just when she takes off walking on her own (yes, still working on that with her physical therapy).  All in good time!

This is his TheraTog suit that he has to wear each day to help with compression and support. 

On another note, we were hoping to get the approval to have another swallow study done to see if he's still aspirating liquids (in hopes of weaning him off the G-tube feedings), but his GI doctor does not think he's ready because his reflux is so severe.  ) :  He will be tested for celiac disease in order to find out if that could be part of the problem with the reflux.  In a couple of weeks he will also have an overnight sleep study at Children's to check for sleep apnea or any unusual brain activity because he's been having a tough time with sleep for several months now.  Hopefully all will come back okay!

And, yes, that is Jackson in his policeman costume in the first video and in his fireman costume in the second video.   More on that later!