reuben's adventure

We're embarrassed that we never even shared our big news – Reuben came off oxygen on December 6.  It is wonderful to have a "cordless" kid.  The first thing Reuben learned to do was to twirl in circles, which he'd never been able to do before.  He was in his first months of walking when he came off of oxygen, but now he runs everywhere.

And he's a little chatterbox.  This week his favorite words are "neighborhood," "excavator," and "truck."  He learns so many words every day – he constantly surprises us with words and concepts we didn't know he knew.  And it is funny to "hear" what we must sound like to him – he often says "Oh, boy," "Oh my goodness" and "mess."  I guess these are things we say a lot!  He also loves to be outside (he says "side!) where he can "dig" in the dirt and "drive" his cars – both little ones that he pushes and bigger ones he can ride on.

All of this means that his development is right on track – which is a miracle, according to the doctors, but Reuben has been one miracle after another, all through his life.  He's such a fun-loving, cheerful, loving boy that it's a joy to be around him.  He loves to read, laugh, and ask us to sing and dance with him.

He still doesn't eat much by mouth, but we've come to accept that this is something that will take a long time to fix.  We work regularly with an occupational therapist on his feeding skills.  He loves going to play with Lisa, the therapist.  We have not ruled out taking him to a specialty program in another state, but it doesn't seem like the right step at the moment.

He can also get out and about a bit more – we visit family regularly and take him to the playground, though we wash his hands regularly when we do these things.  Next month he's even going to start swimming lessons, which I think he'll love.  But we still don't put him in grocery carts or let him run around in public places unless there's a reason; and we still don't take him places where he'll come in contact with someone we know to be sick.  We'll need to be a bit careful again in the fall when cold and flu season starts again, especially because he won't be eligible for Synagis, the RSV vaccine, and a case of RSV could still be very dangerous for him.

But we know that within a few years he will eat and breathe just like a "normal" kid.  When we look back at the pictures from two years ago, and remember everything he went through in those early months, we remember again what a strong, brave spirit he is.

We are so blessed to have him, and to have had all of you who were so supportive and helpful during that dark time.  You all helped us remain hopeful, and for that we will always be grateful.

We think it's time to formally "close" the blog now.  We know that some of you still devotedly check the blog, and others may do so occasionally.  But, as you've noticed, we hardly ever update it any more.  We think that's just a natural progression, and so we'll stop making new postings.  But the blog will remain online – we know that several other families facing similar situations have found it, and we hope that more will do so and that it may help them.

Again, thank you, thank you, for sharing the journey with us.

Love,

Jonna, Eric, and Reuben