Infantile Spasm Update

A little over a year ago, Benjamin was diagnosed with Infantile Spasms, a form of “catastrophic childhood epilepsy.” That sounds scary because it is. Not that the seizures themselves are what you would think of when you think seizures – they are small jerks. Like a big hiccup, where the baby jerks forward, arms go up – or even just like an exaggerated shrug. But if left untreated infantile spasms can cause a child to regress, stop developing completely and have “devastating effects.” (You can find videos online that families have shared so you know what they look like. If you think your child is having these spasms, go to the emergency room right now.)

Ben was treated (what we hope was) very quickly after developing symptoms and saw results from the medicine, Sabril (vigabatrin), right away and has been spasm-free for a year while on the medicine.

Well, just this month Ben has finally 100% weaned off the medicine completely and is doing great so far! In fact Ben is totally med-free. I don’t think there has been a full straight week where that has been true since he was born.

Now, I don’t want to jinx anything (you can take the baby out of the NICU, but you can’t get the superstitions out of the Dad) by celebrating too early because it might not always be that way. It is not uncommon that once a kid grows out of infantile spasms, they develop other kinds of epilepsy. But we’ll quietly celebrate this small victory in this small corner over here – don’t tell anyone.

In other news, we are heading up to Boston this weekend to go to the Early Connections conference at Perkins. It’s a one-day event for parents of blind and visually impaired children (birth to 7) to get together, learn stuff and network. We’ll tell you all about it when we are back.

And now as your reward for reading all of that – here is a cute photo of Ben wearing a tie.

bro ben

If Ben has a dirty baseball cap he would look like a Hobart bro

Benjamin’s Adventures

So besides the walking thing, Benjamin has been a busy little guy travelling all over the place and having adventures. We’ll quickly bring you up to speed:

First (way back in February) – Ben went on his very first plane ride (that was not a flying ambulance) and visited New Orleans.

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Benjamin did great on the plane, but wants to go first class next time

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There was always lots going on in Jackson Square

Ben on steps

Ben gives himself a round of applause

Next he returned to North Carolina in March for our annual spring break trip to the Outer Banks (with a short stop visiting friends in Virginia) 

Ben on the slide

Ben loved the slide

Ben and Clavin hugs

Ben got lots of love from his buddies in OBX

ben in chair

This chair is enormous – but Ben is still small

Ben on swing

Swings are almost as fun as slides

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Jack and Ben play with Play Doh

Then Ben got his very first haircut (that was not done by a nurse)

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A little off the top, Carlos.

Ben got in his first 2013 Mets game (they won)

Ben at MEts Game

Let’s go Mets!

Then just last weekend took a quick roadtrip to Montreal for some yummy food.

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Canada is a little chilly

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Ben and Dad out in Montreal

Of course not pictured during these adventures is about five colds, lots of puke, crying by all involved and a total of 34+ hours in cars (just for full disclosure).

Ok I think we are caught up now… we can get back to timely updates (including exciting Ben news in the next post)

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!))

Baby no more: Birthday Boy Benjamin

It’s Benjamin’s birthday today! I remember right after Ben was born and things were moment by moment, when we watched for the clock to hit 1:04 the next day so we could celebrate 24 hours – thinking about two years was so far from our thoughts that finding ourselves here already is disorienting.

To be honest, last year it felt a little strange on Ben’s birthday celebrating the anniversary of our scariest day ever. Yes- we were celebrating the whole year since he was born, but February 7 2011 was a rough rough day (Again so much thanks to Carol for her amazingness). But this year it feels so much better. It’s 100% celebration this year!

Ben will be spending the weekend with us and family and friends to celebrate his special day (if the blizzard holds off long enough) but we were able to do a little birthday-ing tonight. Here is some super cute evidence of our two(!) year old.

Benjamin plays with his new abacus

Birthday Present: Abacus! Best. Toy. Ever.

Ben sits at his new table

A table for me? You shouldn’t have!

Ben sits on a rocking chair and looks down at the stuffed bear on his lap

Remember when you were bigger than me?

Ben and his stuffed bear sit laughing on a chair.

That’s hilarious.

Ben sits at his table and feels a basket of felt fruit from Ikea.

Fake fruit. Interesting choice for a present…

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!)

Standing Benjamin

It seems even babies who can’t see know when you have your video camera out, otherwise I would be able to share with you a very exciting video of Benjamin going from the floor to standing up without any support! He did it a couple of times in a row last night but we couldn’t get him to repeat it once we had a camera on him. So you will just need to take my word for it.

He also has been letting go of things and standing unsupported for longer than ever before. It made us so happy to see him standing clapping and smiling today for like 20 seconds. Normally he will wobble over pretty fast, or lunge towards us, or make a fun game of falling on his bum.

Ben is also in nonstop motion – climbing up his giant stuffed dog onto the couch or moving around his toys or the furniture in a cruising/rolling/falling/climbing combo. Good thing he’s tough though – he ends up banging his head a lot.

Ben standing up and drinking

He’s leaning on me here but you get the idea