Bedtime for Benjamin

We are very fortunate that Ben is a very good sleeper. He is great about sleeping through the night and wakes at a decent hour. But Ben does not approach sleep gently. He attacks it like a kid at a playground. He thinks bedtime is for acrobatics and leaps across the crib. Here’s just an example of what he does every. night. (and also shows off his new hair cut) <video>

In other news, Ben has been doing well on the food side – not that it still isn’t a struggle to get more food in him than he throws up (a lovely image – I apologize) but he has been easier to feed in general. In fact, he’s now 24 pounds! I know it’s not much for a kid who’s more than 2 years old – but for us, it’s wonderful. In fact – it puts him at the 6th percentile for weight. That’s solidly on the chart.

Ben also had a great time with his best buds, Jack and Jerome, this Independence Day – splashing and laughing. They also took a trip to the Brooklyn Children’s Museum – which was a bit much for Ben, but we’ll be back.

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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…

Dapper Baby

This memorial day weekend we whisked up to picturesque Connecticut to see our friends Brianna and Geoff get married. We also had the wonderful opportunity to catch up with some old college friends- and some of their new additions!

The bride and groom held a pre-wedding barbecue where Benjamin got his first (successful) opportunity to try out the swings. He had so much fun that he would forget to hold on!

Benjamin got all dressed up for the wedding, including a bow tie (courtesy of Maria K!) which subsequently got eaten up. His parents looked pretty nice too, if I do say so myself. He then got to go on his first train ride- the Essex Steam Train- where he got lots of snuggles from Uncle Seth. During the reception Ben had fun dancing with his mom, and ate well too! He only got a nibble of the official dinner- some of the mashed potatoes- but gobbled up his bottles, and some puffs too!

We’re now in the hospital again- planned this time- getting a follow up EEG which will let us know how well the Sabril is working to control Ben’s seizures. Please keep your fingers crossed for us!