The location of Benjamin’s nose

For the most part, when therapists and evaluators ask me what Ben’s receptive language is like, I have to shrug my shoulders. Though I’m pretty sure that he understands us, he doesn’t really follow directions. Repetitions of “Benjamin!” “Shake this toy” and “Where are your feet?” go unanswered for the most part, and it’s hard to say if that’s due to his inability to understand, or because he simply just isn’t into that.

But this Monday got a lot of excitement around these parts, because Benjamin, upon request, found his nose. Several times- so it wasn’t just a weird coincidence.

Strangely, as of today, said nose locale is less certain. We’ll have to practice some more.

Guess who’s walking!

I can only imagine that when you can’t see, learning to walk is scary. It takes a lot of courage to move off into space not knowing what’s there. Up until now Benjamin has figured out how to stand and could walk like a champ when holding your hand, but if you let go he would sit himself right down. But guess who got brave?

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He’s just walking a few steps into our arms, but this is just the beginning! Soon there will be no stopping Ben.

We owe you guys so many posts. We’ll follow up this post with one telling you all about Ben’s travels (we even broke in his passport this weekend (ok, it was just Canada – but the French part!))

Pre Birthday Blogging

Ben’s 2nd birthday is coming up soon, and here’s a quick update of where we stand:

  • Ben is standing on a more regular basis, though mostly we have to trick him into it.
  • Ben started speech therapy this week! Maybe we’ll get some on-purpose words soon!
  • Speech therapy also includes some feeding therapy. Maybe he’ll start eating things too.
  • Ben weighed 22lbs the last time I checked. This means that after hovering just below 20lbs for 4+ months, Ben has gained over 2lbs in 1 month (and is in the 6th percentile for his actual age). This blows my mind. We’ve been pushing the pediasure, and it’s been paying off.
  • Ben got a super cute pair of Stride Rite shoes. They’re like miniature hiking boots. So cute. Ben’s favorite hobby is trying to take them off of his feet and/or eat the velcro.

And finally, here is a poor quality, but very cute, video of Ben playing with a toy. We’ve been working on getting him to drop things he has in his hand for awhile (though he seemed to have mastered the art of “dropping” or even “throwing” at Thanksgiving when he was tossing all offerings of food and toy off of his chair, it’s never been this purposeful), so this was exciting.

Next time you hear from us, we’ll give you the 2nd birthday lowdown, complete with cute photos (including a cameo from Woods the Bear!)

Slow progress – but there are zebras to laugh at

Look! The third post this week! I know! “But Joe, you didn’t write like… forever, and now you are writing all the time.” Yeah, yeah, I know that too. It might not last, I won’t lie, but I told myself I wanted to make an effort to write more and you lucky(?) folks are the beneficiaries(?) of that.

And why haven’t I been writing? Well, the blog is called “All About Benjamin” and to be honest, over the last few months telling you all about Benjamin might have been a bit boring for you and a bit depressing for me. No, nothing bad has been happening with him. Outside of a couple of colds, Ben has been doing well. But his developmental progress has been so slow there is not much to tell you. I get worried about it, and a little sad and it didn’t sound like something fun to write about (though here we are).

When we first started the blog we used it to share the day-to-day and sometimes hour-to-hour updates and a bit of a pressure valve where we could write all the scary medical stuff down and give ourselves a little distance from it. But mostly it has been a place to share Ben’s successes (and cute photos). Maybe it’s ok not to feel like we always need to be cheerleaders with good news and talk about other stuff too (but of course still post cute photos of Ben).

So first things – on the development side, here are the facts… Ben is still not crawling really, or walking without holding on – but he can pull himself up onto things and cruise like a champ. Ben doesn’t have any words yet, but babbles and laughs (a lot). Ben can’t handle food any more solid than a puree (and some days that is too much for him too) but he is so much better with milk and can drink it out of sippy cups. Ben thinks zebras are very funny.


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Ok I know even here, when I said I wouldn’t feel the need to always cheerlead, I am putting happy spins on everything. There is obviously progress and Ben is an amazing little guy. I’m just frustrated. I want to see Ben doing the things the other kids his age are  doing. I want to know that he can talk and walk rather than just hoping he will.

And before you say it – I know, I know I know. I know we are super lucky to even be where we are today. I know Ben has a lot of challenges to overcome and that he’s doing great. It won’t stop me from wanting more though…

Happy First Birthday Benjamin!

One year ago… We had just come back to New York after spending a few days with Carol and things seemed stable enough to go home. That next day was a Monday and I had hardly gotten through my morning emails when Carol called to say they were bringing her to delivery for an emergency c-section. Amy got in the car, picked me up and we headed to Pennsylvania as fast as we could. It was very hard to imagine this ending well. The doctor called us when we were just outside of Lancaster. Our baby was born just after 1pm. He was critical but stable. The doctor urged us to get there quickly.

We named him when we saw him for the first time in the NICU. A tiny little nothing hooked up to a million machines. The doctors looked pretty glum and everything they said was an “if” and a “we don’t know”.

When he was first born, some people didn’t know what to say to us. They didn’t know if they should say “I’m sorry” or congratulate us – because they didn’t know what the next day would bring. But Amy and I knew that no matter what we had something to celebrate. Every extra hour we had with him, even in the little plexiglas box was an hour more than we thought we had.

And all the “ifs” became “whens” and Benjamin surprised the doctors at every turn.

And now a year later. There were a lot of days we didn’t think we’d be here. Benjamin home, healthy, growing. A little laughing silly guy. A one year old!

It was an amazing year and we both look forward to another year of getting to know our little guy. He’s going to keep on surprising everyone, just you wait.