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.



Pre Birthday Blogging

Ben’s 2nd birthday is coming up soon, and here’s a quick update of where we stand:

  • Ben is standing on a more regular basis, though mostly we have to trick him into it.
  • Ben started speech therapy this week! Maybe we’ll get some on-purpose words soon!
  • Speech therapy also includes some feeding therapy. Maybe he’ll start eating things too.
  • Ben weighed 22lbs the last time I checked. This means that after hovering just below 20lbs for 4+ months, Ben has gained over 2lbs in 1 month (and is in the 6th percentile for his actual age). This blows my mind. We’ve been pushing the pediasure, and it’s been paying off.
  • Ben got a super cute pair of Stride Rite shoes. They’re like miniature hiking boots. So cute. Ben’s favorite hobby is trying to take them off of his feet and/or eat the velcro.

And finally, here is a poor quality, but very cute, video of Ben playing with a toy. We’ve been working on getting him to drop things he has in his hand for awhile (though he seemed to have mastered the art of “dropping” or even “throwing” at Thanksgiving when he was tossing all offerings of food and toy off of his chair, it’s never been this purposeful), so this was exciting.

Next time you hear from us, we’ll give you the 2nd birthday lowdown, complete with cute photos (including a cameo from Woods the Bear!)

Ben went to OBX and all he got was this lousy cold

So while last week was a lot of fun with all kids- there is one things kids do better than anyone else: spread germs. By the end of the week every little boy in the house, including Benjamin, were snot monsters. Boogers flowing freely like… well… gross viscous rivers. Ever see Ghostbusters 2? Like that.

For those keeping score this is Benjamin’s first cold. To make it this long it has taken gallons of purell (not to mention a few months of living in a plexiglas box).

So far it hasn’t been so bad – he’s pretty stuffy and a little bit cranky, but no fever and only a little coughing. The doctor didn’t even want to see him. This is quite a change of pace from when he used to get put on 3 antibiotics and have a full blood work up if someone said “cold” near him back when he was in the hospital.

That said, we hope the cold goes away soon. Being sick is no fun (and he’s been sleeping  poorly through all this).

As promised other updates:

Ben’s spasms have really been improved by the vigabatrin. Only a few days after he started taking it the spasms are virtually gone. The only lingering weirdness is at night. We have caught him a few times with spasm-like movements in his sleep. Nothing like he used to have, but it is still not great. Anyhow – we’re hoping that goes away or maybe following his next EEG they adjust the dosing and make him 100% spasm-free.

As for eating – can you believe the boy who would only eat if you were sitting in his glider, with the lights off, the sound machine on and if he were 85-90% asleep, had his best feeding week ever while we were in OBX? Incredible! He even finished full bottles in rest stops! All this eating had him gain a half a pound so – making him now over 15 and a half pounds! Where does that put him on the chart? Well – not quite on it yet. Maybe if he keeps eating we can get him up to 1%.

And lastly – he is completely sitting up on his own now. You lay him down on the ground, turn round, and there he is sitting up! How did he do that?

Benjamin Sitting


It has been very frustrating, but we are finally getting Benjamin’s seizure meds today. We’re hoping they work and they won’t have to try one of the meds with more side effects. As we said last time, the Vigabatrin (Sabril) has one pretty nasty side effect (possible vision loss) but the other options aren’t much fun. The vigabatrin works for a lot but not all babies with infantile spasm – fingers crossed.

In about a month they will bring Ben back in for an overnight EEG and hopefully see improvements in the waves. I just want to see the spasms stop – they are heart breaking. Especially because they scare him and he gets upset.

In other news, even with our stay this week, as of yesterday Ben has been home longer than he has been in the hospital!

And remember how I said I was going to write post about how much Benjamin likes peas? He also likes chicken and rice and has been really good eating solids. It is amazing, especially since he gives us such a hard time with a bottle most of the time.

This photo is from this morning and while it looks like he is upset – he’s really just biting the spoon with gusto!


So long Fluconazole!

Six months! Benjamin has been home for six months – and while he’s still not yet at the “been home longer than in the hospital” milestone, six months does mean something great. At this month’s Infectious Disease check up at CHONY (after making sure his bones look good) they officially took Ben off Fluconazol. He has been on that orally since before he left the hospital (following the 6-week IV course {with a chaser of micafungin}) to make super-duper sure they killed the fungus, killed the fungus’s family, friends, co-workers and pets, burned down the fungus’s house, salted the earth, unfriended the fungus, cut out the fungus from the photos from spring break, etc.

So this means he is not on any major meds any more (a small dose of prevacid is all that’s left). And now we get to test my long-held theory that the fluconazole was affecting Ben’s appetite and taste (supposedly a common side effect) and was the reason he hates eating so much.

Now fluconazole has a long half-life so won’t be out of Benjamin’s system for up to four days – but it’s already been a couple of days and so far there hasn’t been any improvement. I’m still holding out hope that my theory is right and he’ll start eating like a champ again… fingers crossed.

In other news – there is no news. You might be wondering why we haven’t posted in a while – but it’s just because we are sort of in a rut here. And personally I’m finding it a little depressing. Benjamin is still working on that tooth, still working on trying to crawl, still at almost the exact weight for weeks and weeks. Amy has the right attitude and reminds me that Ben is just doing things in his own time – but I’m impatient.

Anyway – here’s a high point from the weekend when Ben briefly like food and fed himself for a little bit. Ain’t he cute?


How did 11 months pass already?

Eleven months! One-One! That’s 31 days until 1 year!

Things have been good in Benjaminland. He has now hit 14 pounds at his last doctor appointment, which is great, but he’s still very small even for his adjusted age. Feeding has been on and off difficult, but one of Ben’s therapists is making a recommendation for a feeding therapist.  If gets approved it could really help, especially as we increase the solids – which right now just makes him puke.

Ben is getting really good at pushing himself up and seems much more interested in moving around. He’s getting to be a strong little guy. We are also hoping to start occupational therapy too. What sort of occupation could Benjamin have, you ask? Well right now his occupation (as listed on the census) is “baby”. So that’s what he’d work on – baby stuff. Though at this rate we’ll have to put in a waiting room at our apartment for all the therapists coming and going.

So lots of 11-month cuteness for you, including a giggle video (and yes – that’s a Steelers shirt from uncle Jamie… no one tell Benjamin about today’s game ok?):

Things that have happened while I wasn’t blogging

You know that moment in December where you look around and realize that there’s less than a week until Christmas, yet somehow the last time you looked at the date it was Thanksgiving? Yeah, it’s been that kind of month. Here’s what happened, briefly.

  • Joe and I have gone to two holiday parties together, sans child. Amy wore earrings and necklaces without fear of them being brutally grabbed by a baby! Thank you for babysitting grandmas!
  • A lot of holiday shopping has been done online. Stores are for people who can leave the house, and whose main advice regarding their child wasn’t “don’t bring him to the mall.”
  • Physical therapy
    -Benjamin is gaining a ton of neck strength and can hold himself up *really* well with support and for a dash without support.
    -Benjamin can “tripod” sit independently for just long enough for me to snap a picture before catching him as he tips over.
    -Benjamin can roll over 3/4 of the way or 270 degrees. He hasn’t flipped from his side to his belly yet, but it looks imminent.
  • Vision therapy
    – Benjamin *loves* vision therapy; there’s songs and lights and lots of toys. His therapist lets him play with lots of different things, exploring different textures, sights and sounds.
  • Benjamin got his first synagis shot (out of 5 total) to help protect against RSV
  • Joe was in Atlanta for 4 nights, Cayman spent some well deserved time at Camp Bow Wow, and Amy and Benjamin had some quality time.
  • Benjamin went from eating really badly to eating not so badly, but also to “only eating for Amy”
  • We got a beautiful Christmas tree. Ben wasn’t a huge fan at first.
  • Today Benjamin is having his NICU follow up appointment. Feels like a milestone!

So someday soon hopefully we’ll put up a real blog post where we talk in detail about any of the above things, or something else new entirely. I just didn’t want to let the whole month slip away without checking in!