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.

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

Quick Update Re:EEG

Just a quick follow-up from the last post to let you know the EEG results were all normal and age-appropriate. Hooray!

Hoping to start weaning Benjamin off the meds soon – we’ll find out from his doc what next steps are. Of course that just means another overnight EEG is in our future, post-weaning

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.

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

Ben is not sure how he feels about his new hat

This is what Ben’s brain looks like

The same but different

Once upon a time, in June 2011, before Benjamin’s fungal infection made itself fully apparent, we were under the impression that he would be coming home soon. So with that in mind, my amazing family and friends threw me an awesome baby shower. The weird thing about having a baby shower when you have a preemie is that all of the cute little baby things look… huge. To keep this in proper perspective, in June 2011 Ben weighed less than 5.5lbs and was still wearing preemie clothes. So when I opened up clothes that were larger versions of preemie clothes he owned, I cracked up. I’m pretty sure everyone who was there thought I was either crazy or had had one too many cocktails. Thankfully, when Joe came home from the hospital later that evening and we sorted through our gifts, he found the giant versions of preemie clothes as funny- if not funnier- than I did.

Now, a year and a half and 16 pounds later, Benjamin can just fit into those 18 month versions of his preemie clothes. (Ben weighs over 21lbs right now- holy growth spurt batman!)

Growing slowly, but growing all the same.

This photo was taken in May of 2011 and Ben weighed 3.3lbs.

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)?

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)

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)

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

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

• Ben got way too many Christmas presents

• Ben hung out with family

 

• And friends

• And had a lot of fun

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

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