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!
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)?
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.
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
Yesterday Benjamin had his follow-up with the eye surgeon and we were not surprised by the news. The blood has finally cleared up in the right eye, but unfortunately the situation there is similar to his left eye – the retinas are folded. What does this mean? Since the retinas are still stiff and are not unfolding, Ben will have extremely impaired vision – as in almost no vision. We suspect he can see very bright lights, as he reacts sometimes to the sun and lights shined directly into his eyes, but he probably can’t see much past lights and shadows. The surgeon said there isn’t anything more that can be done at this time. But he hopes that over time (as in a year or more) his retinas will become softer and then he can attempt to re-attach them. We have another appointment in 2 months and at that point we will see where we are. We will probably also consider a second opinion to fully explore our options, but Dr Lopez is _the_ guy for this sort of thing.
The funny thing is – Amy and I left the appointment not too shaken up about it. We had already come to terms with this and expected to hear the news. We are ok with it.
You may say “With technology always changing you shouldn’t give up hope.” The thing is, we aren’t going to place our hopes in some future technology – otherwise I’d be researching longer pants for when technology can make me 6 foot tall. Ben is what Ben is – and we’re going to make the most of what that means.
It will be different – yeah. But it’s not like we have ever raised a kid before anyway. As I told a doctor today when he told us to let him know if we noticed anything unusual – “We’re first-time parents – it’s all unusual to us.”
We’ll figure it all out, and Ben is going to be great.
Also, on a related note, Amy and I recently watched a trailer for an upcoming documentary on blind teenagers that really moved us. I shared it on Facebook, but I also want to share it here.
The film seems to be a labor of love – you can find out more about it here: http://www.doyoudreamincolor.org/
The eye surgeon came back to check in on Benjamin’s progress this week and the news was not good. The steps forward made from his last exam seem to have evaporated, at least in his left eye. The retina in that eye is closing up again. If it closes completely he will have no vision in that eye. There is a chance it could soften up and reopen, but it is slim.
The right eye had blood in it again. This kept the doctor from seeing the retina at all, so we are not sure what the situation is there. It could be still reattaching, or it could have started closing up too. But the bleeding itself is not a good sign. It could mean more scarring, which would lead to detachment.
The surgeon doesn’t think there is anything else he can do at this point if there is no more progress. Another surgery could be an option – but not for a year or two.
In spite of the bad news, we are not going to let it bring us down. Ben is going to be Ben. And Ben is going to be made up of a million facets and being upset about any part of what that means isn’t fair to him or us.
(That said, we also wouldn’t complain if some miracle happened and his eyes were repaired)
The eye surgeon visited Benjamin yesterday to see how he is progressing since the last vitrectomy. What he saw was pretty positive. He no longer saw any blood in his eyes or scarring and even better – he said that the retinas have partially reattached in both eyes. This is good news. The edges of the retinas are still stiff however. He is hoping they become less rigid over time and can then reattach.
Now I’m not a doctor (I don’t even play one on TV) but the way I imagine it is that the retina is like a movie screen and the front of the eye is like a projector that projects images onto it. Now imagine that movie screen is only partially attached to the wall and all the sides are flapping around and too stiff to lie flat. That is sort of the situation. Now this is an improvement to how it was after last surgery, where the screen was crumpled completely and lying on the floor. And since it’s a movie theater the floor is sticky and has years’ worth of popcorn and gummy bears layered on it. (The metaphor is getting away from me).
Even if I have this completely wrong – the message we received from the surgeon is that this is a positive direction but we still want the rest of the retina to attach in both eyes, but it could take months and months (if it happens at all). And then of course even if everything reattaches the way we hope they will, Ben will still be very visually impaired. But again, no matter what happens it is not going to keep our tough little guy down or keep him from having an amazing life.
"Is that eye surgeon gone yet?"
It’s a mixed bag as usual in the NICU on the news front.
Benjamin’s eye surgeon came by last week and seemed hopeful about Ben’s eyes. He said it seemed like they were re-attaching. This is very uplifting to hear. While it doesn’t yet mean that the operation was a success, at least it does mean his eyes have begun to do what they are supposed to do. Let’s hope that continues.
Also, Benjamin is up to 7 pounds 8 ounces. Not bad!
After consulting with an expert in antifungals the doctors at CHONY have changed their plans for treating Ben. They have doubled the dose of the micafungin and added a second one (fluconizal). They think this will be better and faster – needing only 4-6 weeks rather than 12. He will probably go home on oral fluconizal and will stay on it for months (but at least they are months at home)
On the less positive side, Ben spiked a fever the other day so the doctors ran a full sepsis work up on him and found two different infections (neither of them that pesky fungus). The first one was a positive blood culture from him picc line that everyone thinks is probably a contaminant in the test. The second is a bacterial infection that grew in a urine culture. They are treating him with two additional antibiotics for the next week. Hopefully they can clear it up fast.
Also, though a day late, I want to wish Amy a happy fifth anniversary!