1 05 2009

Ben was three years old yesterday.  Like last year I’m going to talk about some of the things he can do this April that he couldn’t last April.  Benjamin seems much more aware of his surroundings now.  He really notices what’s going on, and most of it entertains him.


Ben is balancing better on his own, taking some steps in his gait trainer, and even balancing on the couch by himself for short periods of time.  


Benjamin is much more interactive with people now.  This started last August when he would sit on my lap and watch the Olympics all evening.  He really enjoys attention, and lets you know it.


Ben is crawling now, and rolling all over the floor to get to toys and other things left on the floor.  It’s become his favorite thing to do.  

ben hits the whammy bar for total rock domination


Ben is doing a little better with feeding.  We’ve been working with the feeding clinic, and they’ve been advising us on how to introduce food, etc.  He’s started opening his mouth for food out of resignation.  It seems we are wearing through his defenses little by little.  


He did, however, like the frosting from his birthday cake.  


Happy Birthday Ben.

Battle Royale

24 03 2009

Nate and Ben have been battling it out over toys lately.  It’s a toss up who’s going to win each one, but Nathaniel has been winning more and more of them.  Ben, however, has a secret weapon.  Once the toy is gone, he often loses interest. 

Let the games begin

This wonderful activity table was a Christmas present to the little ones from their dear Auntie Dawn.  It’s very cool that they can both play with it at the same time.  Nate still wants to keep pulling it away from Ben, though.

An old friend

11 02 2009

Ben is almost three.  Looking back on each year it’s inspiring to see the progress he’s made.  And that’s a good thing, because day to day it can seem like there’s not much happening.  But there is.

Long long ago there was a time when Ben couldn’t do much.  He couldn’t sit up without support, he couldn’t roll over.  He could, however, hold a toy in his hand and “play with it.”  By this I mean that he would wave it in front of him.  He could also stand in an exersaucer and bat at toys.  But his three positions during the day (besides on my lap) were in the saucer, lying on the floor, and sitting in the swing.  He napped (and got fed) in the swing, and when he was there he had a favorite toy.  It was one of those toys meant to put over a carrier-type car seat.  Baby pulled on the ring, it came towards them, and vibrated on its way back up.  Ben loved it.  He’d play with it for long stretches of time.  But eventually he became bored with it.  So it got put away.

Nathaniel arrived last summer, so we’ve been getting some old toys out again for him to get bored with, and the old bumblebee was one of them.  Ben is rarely in the swing these days so he hadn’t seen too much of it.  But the other day I set him there while he napped and he started playing with it again.  Pulling it, letting it vibrate, never letting go.  He always liked feeling the vibrations.  

swinging himself and lounging around

So I sat there watching him pull and relax, pull and relax.  He was remembering just like I was.

Ben is getting big

9 07 2008

It’s funny. There have been a lot of people telling us that Ben is “growing like a weed.” It seems that we hear it at least twice a week. We smile and nod, but we had Jonathan. Jonathan was 27 pounds when at six months old. Ben is two years old and 16 pounds (give or take). Ben isn’t really growing like a weed, it’s more like a bonsai.

But every now and then we are struck by just how much he has grown. For example, Ben’s physical therapist first brought a gait trainer for him back in February. I thought it was way cool so I took some pictures.

Lately Ben has really liked getting in the gait trainer so we’ve been putting him in it more often. This past Sunday I took some more pictures.

It may be a little misleading because he is wearing sandals, but he is definitely growing.

He is getting longer (taller? When do you start saying “taller?”) this summer. Why is it that kids always grow the fastest in the summer? He’s too long (tall?) for his 9-month sleepers that I bought him in May. I’m having to go to the attic to find some 12-month sleepers for him. And I’m very glad to do it.

Ben was having such a good time in the gait trainer on Sunday that we kept him in it for a while, and I guess he got tired.

A very comfortable position, wouldn’t you agree? Yes I took him out of it after I snapped the picture.

Ben is two today

1 05 2008

I thought of it myself

Well technically his birthday was Wednesday. It took me a while to come up with something to write, though, because at first I was kind of sad. Remembering back to what was happening in the days after Ben was born can be tough. We were glad to have the little guy around, but sad that he’d have to deal with these disabilities his whole life. And Ben is developing very slowly. But then I started looking through the pictures we’ve taken throughout the last year and it made me feel better. It’s very cool to look at where we’ve been and see how far we’ve come. So that’s what I’m going to do.

This is how small Benjamin was when he was first born:

Here he was a year later, on his first birthday:

Isn’t Mommy pretty?  Since his last birthday he’s learned to do a few new things. He’s started rolling over onto his belly by himself consistently.

He’s even started rolling around the room to get to toys.

He’s learned to hold onto things, like toys,










drumsticks (he also likes to play the drums),

and even his mic-key tube.

He’s even started bringing things to his mouth, which we think is very cool.

But the coolest of the cool is that he sits up by himself very well now, and he likes doing it.

I just need to work with him on his balance so that he can catch himself before listing over too far. There is a point of no return on that right side since he has no way to catch himself over there. In the past year we haven’t made a whole lot of progress with “mouth food,” but I like to attribute that to the fact that he’s been teething constantly since Thanksgiving.  Ben is interested in food, but it usually takes some convincing to get it near his mouth.

Happy Birthday Ben. We love you.

Ben’s reach

21 04 2008

Monday was Panera day since nobody wanted to cook. We brought home our wonderful goodness, and since it was kind of cool and rainy I got potato soup. Ben didn’t want to sit in his high chair so he was sitting on my lap as I ate. It was an interesting exchange. Ben was holding a spoon because he likes to hold things, and I was trying to see if he’d let me feed him. He was squirming and not cooperating. In all honesty these days he’s a little more adverse to oral stimulation. Ben’s getting in a few teeth and he’s been making such progress with physical development that I guess the oral motor skills took a back seat. And that’s my fault.

At one point during dinner Ben dropped the spoon he was holding. It fell to my right, so I leaned over to get it. As that happened I guess I leaned Ben forward just a bit, and he saw something else that he wanted to play with. The Styrofoam bowl that the soup was in. By the time I came back up with the spoon (total elapsed time: 0.7 seconds) the bowl was tipped all the way over, and the soup dripping off the table.

So Benjamin is coming up with some pretty creative ways to put an end to any physical / occupational therapy sessions Mom and Dad try on occasion. Luckily it was a thick soup, so it didn’t all land on Ben and my lap.

More than you ever wanted to know about feeding pumps

9 03 2008

Below is a photo of a feeding tube snaking through an Enteralite pump on its way from the bag of milk to Ben’s cute little belly.

I know, it’s boring.  Keep reading.

That’s a very fortuitous arrow right there, because that’s the spot where the tube split open. It held on by the tiniest of threads, like Nearly Headless Nick.

luckily Karen discovered it so she had to clean it up.

Lots of spillage. Some milk got into the inner workings of the pump, rendering it useless. It would alarm over and over, showing us an error message on the display. No pumping was going on.

Now tell me, when do things like this happen? Do these things happen between nine and five on a weekday? Not a chance. These things happen to us at midnight.

On a Saturday.

During spring forward weekend.

That was one happy individual on the other end of the phone, let me tell you. Talking to our medical supplier at midnight, he told me he’d get a delivery guy to bring us a new pump right away. Except it’s a ninety minute drive from them to us.

So here’s the scenario for the poor sap who was on call this past weekend. It’s a little after midnight. Maybe he just lolled off to sleep when he gets a phone call telling him that he’s got to get dressed, go to work and get a replacement pump, and then drive an hour and a half to our house and an hour and a half back.

Since it was so late I thought it only fair that I stay up and wait for him. I didn’t want him standing at the door ringing the non-working doorbell while I lay in bed not hearing him. I got a little caught up on a video game I’d been neglecting. He arrived at that magical hour when the clock turned from 1:59 to 3:00. I thanked him profusely and took the new pump upstairs to start Ben’s overnight feed, albeit a few hours late. He was a little restless in his bed, but calmed down once everything got going again.

As for service, the delivery guy called back Sunday afternoon to make sure everything was working okay.


22 02 2008

When Karen was pregnant with our firstborn a very wise friend of ours told us “Get baby socks from Old Navy. They’re the only ones that stay on.” True enough, they did. So we’ve bought all our baby socks from Old Navy (as much as we could, they don’t always have stores this far out in PennsylTuckey) and they’ve served us well. Until now. Now Ben’s socks just won’t stay on at all any more, so we’ve been forced to retire them. Here’s a select few that got the heave last weekend:

socks are the most interesting thing in the house this week

I’m not sure where those realllly long ones came from, but they did keep Ben’s legs warm when he was growing out of his pants. But there it is, the feeble few Old Navy socks that finally gave up the dust. They seem to fall off of their own free will these days. Then again, the tag says “0-6 months” so I’m actually kinda impressed that here Ben is, almost two years old, and we’re only now just throwing away the first socks we ever bought him. They lasted through almost two complete winters, so I’m not at all shocked that they have no strength left.

Ben’s a small guy. He’s always going to be a small guy. And this whole sock thing gives me an idea. I’m thinking we should buy all his clothes from LL Bean and put to use that lifetime gaurantee. Doesn’t Sears have something like that too, where they’ll replace any children’s clothes for free that wear out before the kids grow out of them? They’ve met their match in us.

Ben:1, Dad:0

16 12 2007

Benjamin’s therapy sessions don’t always go as planned. Sometimes Ben doesn’t like what’s going on so he tries to sleep to escape it, which means we have to try something new to keep his attention. His therapists aren’t big softies like Dad, though, he doesn’t get away with much with them. But sometimes he’s already asleep when his therapists get here. This is due to Dad’s lack of a meaningful schedule for him. It’s always interesting to see which technique works to wake him up each time.

Last week Ben had Physical Therapy and Occupational Therapy back to back. That’s a lot of work for one little guy. And it was also probably my fault. Ten minutes or so into OT Ben decided it was nap time. So we tried lots of different things that didn’t work. That’s when I brought out the big guns: the black beans. Yes, we’ve been using dried beans and rice as sensory therapy lately, but even that didn’t work.

you can’t wake me up you can’t

Usually it’s the grabbing of his arm that bothers him the most, but he generally likes the beans a lot less than the rice. And yes, that means that one of my strategies to wake him up was to annoy him. Tell me you haven’t done it. Besides, it didn’t work. We continued trying different things and he eventually woke up when he was good and ready.


20 08 2007

Every now and then I’ll realize just how little I mention Benjamin in this blog. Of course, Karen talks about Ben all the time in her blog. I try to keep things here lighthearted and funny, if not a bit cynical. It’s impossible for me to be cynical about Ben, and he’s not doing anything particularly funny yet, so he tends to get passed over in my posts. I suppose that as he gets older and gets into mischief this blog may turn into my misadventures with him.

But then about a month a go (maybe more) Daddyforever tagged me for a meme, or something like that. He changed the rules so I don’t really know if it counts as “tagging,” but I took it as a kick in the butt to talk about Ben again.

Ben is a very interesting individual. Every night he peaks at about 11pm, entering into his happiest mood of the day. Maybe he’ll enjoy the club scene when he gets older. He does, however, go to sleep as soon as we turn out the lights. I hope that continues, or my love affair with coffee will grow even stronger.

Okay, so Ben weighs a little over 13 pounds, and for that weight he’s in size 3 diapers and 6-9 month clothes. That’s unusual. It’s because he’s shorter than normal, so he’s a bit on the chunky side. I can’t say that he’s chubby, because all references to weight in our house are tempered by Jonathan, who weighed 27 pounds at six months.

Ben at the Doctor’s office

Ben is enjoying his physical therapy sessions a lot these days. After 16 months he’s getting tired of being horizontal, so he’s very interested in sitting up and standing, all of which we practice during PT.

Ben standing next to his saucer

Occupational therapy is going well too. We’re focusing on feeding him by mouth, and we’re still giving him little tastes of food at a time. Sometimes he’s not in the mood for this and complains at first, but his OT is very patient and positive, and he always comes around for her. If only she could stop by every day…

Ben is playing and happy

He’s also playing with toys a lot these days. He likes grabbing toys, not just mashing them with his hand. Yes, Dawn, he really likes that singing bunch of flowers you gave him. I’ve often heard that children with special needs love music, and that is certainly the case with Ben. Finally someone who will appreciate my guitar playing. Isaac has been learning music from the Zelda video games on the piano, and Ben loves listening to all that. And one morning I was playing one of those baby CD’s for him and he wasn’t too enthused about it, but he quieted right down when I switched it to Green Day. Maybe next I’ll try Jackyll…

So that’s another post about Ben. I’m going to try to incorporate him more into my regular posts, but I’ll probably end up ruining that too…