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.
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.
If Ben has a dirty baseball cap he would look like a Hobart bro
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?
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!))
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.
Birthday Present: Abacus! Best. Toy. Ever.
A table for me? You shouldn’t have!
Remember when you were bigger than me?
Fake fruit. Interesting choice for a present…
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.
He’s leaning on me here but you get the idea
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.
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…
It’s been a while since we’ve done a real update post. Benjamin is doing well these days and continues to be the most cheerful, giggly baby in existence. It’s downright maddening trying to feed him a bottle and he’ll decide it’s funny and just laugh and laugh without drinking anything. And he’s just be too cute to be annoyed at though.
But his feedings are actually pretty good, even if the doctors are not thrilled with his weight gain yet. We’ve begun adding olive oil to his solids now too to add extra calories – maybe that will help.
The exciting news lately is the other night we found Ben standing up in his crib (yelling) – which is a big step since he hadn’t pulled himself up yet. But then we noticed blood just spilling from his mouth all over the place! He was gnawing on the crib rail and cut his gum a little – we stopped it pretty quick but it was scary seeing all that blood. Plus you should have seen the teeth marks he left on the rail! We have since lowered the mattress and added a gummy rail protector.
This all comes as he’s getting three new teeth all at once, too!
He is standing so much better and getting the hand of walking with a push cart. It definitely seems that he’s going to skip right over crawling as predicted.
In other news, Benjamin is loving Music Together classes he started last week with his momma.
Huh. This thing makes noise.