Wednesday, May 20, 2009


I have been thinking a lot about perspective. Sometimes it is shifting the way we see something (literally in Bean's case) or life's backdrop that changes our perspective and ultimately our experiences with ourselves and one another.

Nate's big shift is that he's pretty much sitting on his own. About two weeks ago he basically sat all by himself for his whole music class!! It was amazing to follow his eyes and see what he noticed. He played with all the instruments and just loved looking at all the other children. And the cool thing is - once he started engaging more, the other children wanted to engage with him more. At one point, a little girl decided that Nate's lap would be the perfect place to sit. You should have seen Nate's face - It was priceless!

Just a simple shift in in our thinking allows us to see all the things Nate can do.
Again, it is all in perspective.

Tuesday, May 19, 2009

This and That

The last few weeks -- or has it been a month (yikes) have felt like a blur. Lots of sun...laughing...sleepless nights...and baby babble....

First the swallowing study....Here's a pic:

The good news is that all is well on the swallowing front. Nate still can only handle pureed food. Looks like we may have to talk to a SLP or feeding specialist about that. In general eating is going better. He is eating 3 meals now!

Also - the EEG came back, "relatively normal" - however, the doc still recommended that we follow-up with a neurologist. I should note that at first we thought we would just wait to see a neuro. But over the last few weeks, Nate's odd behavior continues to increase -and not just when he is eating. He also is doing some weird eye-rolling-in the back of his head stuff. Not sure what to make of it, but are thinking we really do need to see someone.

Ahh - the sleepless nights. It's still so funny to me how many times I heard that Down syndrome babies sleep well. Ha! Last night was our hardest night yet. I am not sure how any of us will function today. I think Nate was up every 30-45 minutes last night. At this point we just want something to show for all of our hours awake. A tooth would be nice.