Amy, Ben and I drove up to Boston this past weekend for the Early Connections conference at Perkins School for the Blind. The event is centered around educating parents of visually impaired children up to 7 years old. It was really wonderful to meet other parents who have similar stories and meet their kids. One of my favorite sessions was a panel of visually impaired and blind teenagers who were about to go to college talking about how their parents helped make them independent by treating them like any other kid – making them do chores, not coddling them, not having lowered expectations. Watch out Ben — looking forward to you doing the laundry!
They also had tables set up from different organizations and vendors showing off their accessible gear. During the conference Ben got to have fun while his folks were learning with a full scheduled day with the other kids.
Perkins was a beautiful campus and has amazing facilities. I wish we had something like it in New York City. But of course we were so busy we never even took a picture – so I have nothing to share today.
We also had a nice visit with our Boston friends. We will be back again, so maybe pictures next time!
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
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.
Benjamin did great on the plane, but wants to go first class next time
There was always lots going on in Jackson Square
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 loved the slide
Ben got lots of love from his buddies in OBX
This chair is enormous – but Ben is still small
Swings are almost as fun as slides
Jack and Ben play with Play Doh
Then Ben got his very first haircut (that was not done by a nurse)
A little off the top, Carlos.
Ben got in his first 2013 Mets game (they won)
Let’s go Mets!
Then just last weekend took a quick roadtrip to Montreal for some yummy food.
Canada is a little chilly
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)
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!))