One time at blind camp….

We spent last week at VISIONS Center on Blindness (formerly Vacation Camp for the Blind) with Benjamin and had a great time all around. VCB is not too far away from us, but it is on a big piece of property in Rockland county and was a nice break from the city.

The week we were at VCB it was reserved for families with children with visual impairments up to 5 years old and children with multiple disabilities of any age. And while every kid is very different, it was really good for us to meet other parents who understand first hand what it’s like. Other weeks throughout the summer are set aside for older kids and adults, so Ben can look forward to visiting VCB for a long time.

Ben got to play all day, socialize with other kids and go in the pool while Amy and I went to workshops and parents groups (as well as a good amount of just plain relaxing). Each evening the center ran events and even had a couple of parties.

The counselors and the staff at VCB were amazing, wonderful people who could not do enough for the families staying there. You could tell how much they cared about being involved at VISIONS. It really made it special.

We are grateful for the friends we made at VCB and we can’t wait to meet up again. Special thanks to everyone at VISIONS for a great week and to everyone who helps support it, including our regional Lion Clubs.

And now for some cute photos…

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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A Boy and His Cane

Ben tries out his cane

Ben tries out his cane

Ben is just starting to walk but we wanted to introduce a cane to him right away. We don’t expect him to use it properly anytime soon – he doesn’t even have an O&M instructor yet – but we thought it was important to get him (and us) used to the idea of his cane as being a part of geting around. Right now he mostly thinks it’s fun to bang on the ground and chew on, but some day soon his cane will be his best friend. Learning to use a cane will be an important part of Ben being independent.

Benjamin’s cane is a free cane provided by the National Federation for the Blind. Special thanks to Barbara Pollard whose donation to the NFB provided the cane for Ben. You rock!

I’m sure we’ll be writing more about the cane as Ben gets better at getting around, and especially as he heads out into the wide world.

Also – you may notice the blog is changed a little bit. We gave it a new look and changed the title a little. It’s just “All About Benjamin” now – no more “baby.” Benjamin is growing up!

Perkins Early Connections

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!

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.

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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

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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

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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…

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

Benjamin’s Brain

So the other day I gave you an update on Ben’s vision, and today I’ll give you an update on Ben’s brain. It’s no coincidence since we are in the hospital today for a scheduled overnight EEG to check in on Ben’s seizure activity and make sure the meds are still working.

To summarize where we are at this point:

Ben was discovered to have some pretty sizable intercrainial hemorrhages when he was still in the NICU (in April 2011). They were in his optical lobe and his cerebellum. At the time is was a wait and see sort of thing. When they found the bleeds they were already old, and hadn’t seemed to affect him yet. The doctors told us that he would likely be affected by the bleed, but brains are funny and it would be hard to predict what would happen. His prognosis was not great for potential motor skills and intellectual abilities, he was at a very high risk for cerebral palsy and seizures. We wouldn’t know the extent of his disabilities (if any) until we started seeing him miss lots of milestones. (This one of the reasons I get so nervous about his delays.)

In March of last year, Ben started having these small seizures, known as Infantile Spasms- a form of epilepsy that children under two develop, sometimes because of brain injury (like his bleeds). If these seizures are not treated very very quickly, it can be very bad for a baby’s brain. Every spasm is doing damage and the baby stops developing. It’s scary. Luckily the medication Ben is on – Vigabatrin (Sabril) has worked wonderfully for him. One side effect of this treatment is potential damage to vision, but that’s not a big deal for Ben. So far since the drugs kicked in we have not seen another spasm and his last EEG was clear –  but that was back in May.

So we are in the hospital today and overnight until tomorrow to check his brain to make sure everything is still normal so we can start to wean him off the Vigabatrin.

It’s no fun getting an EEG though – they glue 25 electrodes to Ben’s head and wrap the whole thing up so he won’t mess with it and then he’s connected to a computer and watched on video over night. Hopefully in the morning they will have everything they need so they can send us home.

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Ben was so brave during this part – such a tough little guy

Ben's EEG Hat

Ben is not sure how he feels about his new hat

What Ben's brain looks like

This is what Ben’s brain looks like

Benjamin’s Vision

As you probably know, Ben is blind. We don’t say it in the blog outright like that very often, but that’s the situation. When people hear the word “blind” they often think 100% no vision, complete blackness. But most people who are blind have some light perception or can see outlines, shadows, etc. Legal blindness (in the US) is considered “central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less.”

So what can Ben see? People ask us this a lot. We don’t really know and we won’t until he can tell us. But because of the ROP his retinas are detached and while we might be able to get surgery to try to reattach them, he won’t ever see much at all. Right now he definitely has some light perception. You can see it when he is in very bright sunlight he will scrunch his face up. Also when using a light box Ben will sometimes reach for items placed on it (we think). If he has any vision at all it will be out of his right eye. His left eye is much worse. It had much more aggressive ROP disease and is much smaller than his right.

In order to help keep his bones growing the right way, and specifically the part around his eyes, we have been trying to get Ben to wear an ocular prosthesis. It’s like a very thick contact lens that is covers the whole front of the eye. When he’s wearing one his left eye looks more even in size but it’s not the most comfortable thing in the world. Ben is very good at getting them out. The longest he has kept one in is a week and a half. And believe me, it isn’t fun trying to get it back in. We are actually going to take a break on it and try again in the summer when going back and forth to the prosthetist is easier. It isn’t really necessary yet, but the earlier he gets used to it the better.

There has been something new we noticed though in Ben’s eyes… look at the photo below – what do you see (besides a tired baby who is still messy from dinner)?

Ben Red eye

Red eye (well a tiny little bit of it)! Red eye is the flash bouncing off the back of the eye and when your retinas are not attached or there are other issues in the eye you may not have red reflex at all. Ben never had any in the past that we noticed – but that little sliver of red is interesting. (Though note – we are not putting too much into this)

Anyhow, vision or no vision, Ben is fine, happy and healthy.

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…

An award?

Thanks to Maria at Mummyhoodmadness for passing on a “Liebster Award”.

It is given to blogs with less than 300 followers as a way of making them more well-known to other bloggers. So what the heck, I’ll play along.

The rules for the acceptance are (man I didn’t know there would be homework!):

1) Visit and thank the blogger who nominated you (done and done)
2) Acknowledge that blogger on your blog and link back (also done)
3) Answer the 10 questions posed by the blogger who nominated you (ok… will do that below)
4 ) Select 3 – 5 bloggers for the award (all right let me think about that)
5) Pose 10 new questions to the new nominees (wait – is this a chain letter?)
6) Post the award on your blog (easy enough – let’s do this right now)

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Ok – answer time (and I’m answering just for me here):

1) What made you start blogging?
When Benjamin was first born we wanted to keep our family and friends up to date but all those phone calls are rough – especially when things were scary. (And we hated the caringbridge interface… so , here we are). Then it became more of a way to vent, then it became a place to share Ben’s progress, and it looks like it will be shifting to be more about raising a super kids who is visually impaired

2) Best childhood memory?
Staying up late with my friend Chris, mixing up awful blue concoctions to drink and watching bad movies

3) Favourite place in the world?
That one is easy – our friend’s family place up on Lake George. Early in the morning, sitting on the porch with a cup of coffee.

4) Summer sun or Winter wonderland?
I’m more of an Autumn…

5) First thought that came into your head when you woke up this morning?
No way that’s my alarm – no, there has been a terrible mistake sir. I am going back to sleep until this is straightened out

6) Popcorn, sweet or salty?
Why not both?

7) Predictable or spontaneous?
Predictable – I am boring and risk averse

8) Worst subject at school?
German (Good thing I took Italian)

9) First thing you would buy or do if you won the lottery?
Candy

10) Personal ambition you have?
I really just want to make it through the week is all

So who gets nominated from me?

Thomas Marshall Does it All – A very very helpful blog for Amy and I with great tips for raising a visually impaired child. Thomas is an amazing kid and we love this blog.

The McGloin Family – Mia writes about raising her two boys on her blog she started when her first son was born prematurely. We love all the really cute photos of her kids.

Amber and Max – Amber does a great job sharing her thoughts on raising a blind child and is always on the look out for interesting books and information.

And for questions if you would like to play along too – a little old, a little new

  1. Why did you start blogging?
  2. What is the most important thing you have gotten out of your blog?
  3. Favorite memory
  4. Favorite book
  5. Favorite place
  6. What movie have you seen the most times?
  7. New years resolutions?
  8. What was the first thing you wanted to be when you grew up?
  9.  First thing you would buy or do if you won the lottery?
  10. Seriously, though – how cute is(are) your kid(s)?

Happy New Year – Where’s Ben been?

It has been forever since we’ve posted last. And look! it’s a new year – Christmas has come and gone, and Benjamin is quickly approaching his second birthday. What has Ben been up to? Let’s see:

  • Ben got better at eating (but still a pain in the ass)

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  • Ben visited some old friends at CHONY (but slept through the whole thing… sorry Dany, Amy and Leora!)

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  • Ben got to meet Santa (but was more interested in feeling the candy bag)

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  • Ben got way too many Christmas presents

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  • Ben hung out with family

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  • And friends

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  • And had a lot of fun

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  • And Ben finally hit 20 pounds! (just today actually)

Anyway, happy new year – and I hope to post more frequently in the coming weeks.

Rock and Roll Fundraiser!

Benjamin is an extremely lucky little boy. He has family and friends who love him so much. He also has organizations that have helped him and will be there to help him in the future. One of these organizations we are grateful for is Lighthouse International. Lighthouse is where Ben’s early intervention is organized out of and they have been fantastic helping us get everything possible to help Ben get a good start.

So when our friends Greg, Matt, Jo-Ann and others asked if they could throw a benefit in honor of Benjamin, Lighthouse was one of the first places we thought about. So we are super excited to share that Greg’s company JP Reis is going to host an open mic evening in New York City to raise money for this great organization

Everyone is welcome so bring your singing voices, instruments and dancing shoes for a fun night of musical free expression; you can bring your whole band if you like! The list of guests and confirmed musicians is growing fast.  Entry is free and there will be happy hour specials. At the event there will be opportunities to support Lighthouse and hopefully I will be able to share a link for donations even if you can’t attend.

You can RSVP here.

Event: Rocking Wall Street

Date:  12th September

Time:  6pm the music starts at 7pm.

Place: Suspenders Bar, 111 Broadway, Financial District, New York

Lighthouse International has led the charge in the fight against vision loss through prevention, treatment and empowerment for over 106 years. We know that Lighthouse will continue to be a resource for Benjamin as he gets older – and we are proud to be a part of this event.

Thank you so much everyone involved in planning this – it means so much to us.

(also – we know we haven’t posted in forever, but we have lots of photos and updates from our summer… for now, accept this cute photo as a placeholder)

Benjamin at the PEZ factory

Benjamin at the PEZ factory

How much wood would a Benjamin chuck?

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.

Happy Supposed-to-Birthday Benjamin!

Today is June 3rd, the first anniversary of Benjamin’s original due date, or his supposed-to-birthday. That makes him 1 year corrected today (just about 16 months actual). Ben had a fun weekend seeing both his grandmothers as well as some friends in from out-of-town. He also had his first subway ride on Friday and got to visit FAO Schwartz. Our friend Scott played the theme to Elmo’s World on the big piano (made famous in “Big”) to entertain the little ones. Ben also enjoyed watching the Queens Pride parade today – so much music and dancing!

Before we look at new pictures of the supposed-to-birthday boy, a flashback to last year at this time:

One year ago, Benjamin 4 months old on his due date

Oh what a difference a year makes! Here’s Ben today: