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.