Ben is two today

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

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

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.

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.

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.

Socks

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:

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

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.

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.

Ben

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 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.

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…

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…

Wrinkly feet and pasta

We’re done socializing until Christmas. We weren’t our usual antisocial selves these past two weeks. On the bright side we did go to pool parties two days in a row, and we learned that swimming is Isaac’s new favorite thing to do. I got to take Ben into the pool and he loved it. Isaac liked playing with Ben in the pool too, although Ben didn’t like being splashed in the face. But he stayed in the water with me so long that his feet got all wrinkly:

Since Karen is going back to work this week we did as much cooking as possible, and we’ve got leftovers for three days I think. Tomorrow I’ll try to cook for two more days and that will be it for the week. Tonight we made lasagna rolls we found on Cooking Light magazine and Mario’s mushroom soup:

It’s kind of fun when we cook together. First of all, dinner is edible. You know what I did for this dinner? Not much. Karen did the assembly work, which is why the lasagna rolls look so nice and round. I’m sure I could’ve made it into something resembling a jellyfish. Karen also made the sauce and used three times the amount of garlic in the recipe. Karen and I loved it but the boys kept saying “too much garlic!” In their lasagna rolls we just put the sauce and some mozzarella cheese, told them it was “pizza noodles.” In the future we might just use pizza sauce for them since we like the garlic.

One good birthday, one good year

Today was Ben’s birthday, and we were back at the hospital, this time to meet with the feeding clinic. That made it a good reason to be there, and things went well, but the spring air and the trees budding around the hospital brought some of those feelings back from last year. It’s hard to go through the day without thinking “Where were we now?” a year ago. And right now we were in the hospital scared shitless. Ben was just a few hours old and we knew something wasn’t right. We didn’t know that this night would be the easiest night we’d have for a long time.

For those who don’t know, our youngest son Benjamin has Cornelia de Lange Syndrome. You can read about it on Karen’s blog.

Some random thoughts on our first year with Ben:

When Ben was born I wanted to be the one to tell Mommy whether it was a boy or a girl (we’ve never found out early), so I was looking “down there.” Apparently my attention was so focused that I missed seeing his right arm. His partially formed right arm. “Never mind that, is there a scrotum or isn’t there?” (That’s not what I said) We all have our priorities.

It took us a while to name him, at least an hour, maybe two. We’d really struggled with names during this pregnancy, especially for boy names. We picked a name while he was in the nursery with the pediatrician. First we picked Benjamin, but we were having even more trouble with a middle name. A three syllable first name is tough to follow, so we picked Emmanuel; plus I thought we might need God to be with us.

There are times when I think that my kids have life figured out better than me. Some time in those first couple of days Isaac asked his mommy “Why does Ben only have one arm?” Mommy was very honest and said “That’s how God made him.” Isaac paused, thought things over, then turned to Mom and said “That’s not fair.” No it isn’t.

Of all the toys Benjamin has played with, stroked, or squeezed, his favorite toy is his little arm. It is also Jonathan’s favorite toy.

When Jonathan was born Isaac liked him immediately, but nothing prepared me for the affection shown to this little child by his big brothers. They simply adore him, and he returns the sentiment. Isaac likes to hold Ben and help take care of him; Jonathan plays with him incessantly. I’ve given up saying “Jonathan stop that!” because Ben usually has a smile on his face when I do. Now I say “Be careful.” Everywhere we go there are children that ask about Ben; “What happened to his arm?” and “What’s that tube sticking out of his shirt?” Isaac is ready and quick to answer all their questions; he is so proud of his baby brother. Jonathan is starting to be that way with the kids at preschool.

Jonathan was the first person Benjamin smiled at.

Thank you to our friends who babysat Isaac and Jonathan while Ben was in the NICU. Thank you to Aliyah who watched them when Karen was in labor, and helped out around the house also. Thank you to my father- and mother-in-law who flew up from Trinidad to be with us and to watch the boys while Ben was in the NICU, and then during his surgery. Thank you to all the families from Isaac’s preschool who made us dinner for almost a month. We had so much food we had to freeze some. Thank you to the people from Karen’s office who gave us $400 in gas cards since we had to drive an hour each way to visit Ben in the NICU. And thank you to everyone whose thoughts and prayers helped us get through one tough year.

Benjamin is fascinated by his feet. A couple weeks ago he was sitting in his Bumbo seat in front of some toys we had for him to play with. Brightly colored toys hanging from a mobile, and he’s craning his neck to see his toes.

Benjamin also seems to have life figured out. We’ve received and we’ve purchased a lot of toys for Ben, more than I thought I ever would for a third baby. He enjoys playing with his toys and likes to roll on the floor from one to the other, but they never make him smile like he does when he’s playing with people. He truly craves human attention and interaction. Perhaps this is why he likes Jonathan so much.

I went for a walk with Jonathan this evening. We were gone for about a half an hour, and he never shut up once. I didn’t hear all of what he said. Okay, I didn’t hear most of what he said, but I didn’t have to. We were just walking and he was happy to be out, just the two of us.