Archive for February, 2007

In which Ben is now one…a long post

February 28, 2007

It just takes me so long to get around to blogging, what with everything else going on. 🙂 As I posted a few days ago, Ben is indeed now one, and after the flurry of activity, visitors and parties, he is doing alright. Our physical therapy has been switched to Monday afternoons now (from tuesdays). Therapy in the afternoon is an adventure. I have to deprive Ben of a morning nap, feed him lunch early, then put him down for a nap earlier than usual so that I can get him up at two thirty and get to school by three. This seems to work okay, but Monday was kind of a disaster. After talking to the OT (occupational therapist) for awhile on cups and weaning from the bottle, Ben was NOT into doing anything productive with his remaining time. He just sat and cried. I think some of it was tiredness, some was left over from the weekend, and some was just plain stubbornness. The upshot of this is that when the PT (Physical therapist) poked her head in to say hello, he was a mess. We had this PT in the fall, then our day got changed and we had a different PT. Both are excellent, and it didn’t matter too much to us. But Ben has changed so much since fall, and as I was telling her this, she was giving me a look like I had just taken some exotic psycotropic drug, because Ben was crying, limp, and generally NOT looking improved at all. It’s okay, next week will be better, right?
We spend time every day doing “therapy play” with Ben, and at this point, it is all just play to him. I want to keep it that way. I don’t want to have “therapy time” and “play time” at home. When he gets tired, we stop. Sometimes we just do a little bit all throughout the day, and that is fine. Sometimes, I feel like I’m spinning my wheels, and I’m completely overwhelmed because there is so much I need to do with him. Be careful of how he is positioned at all times. Regular cups, not sippy cups (more on this later). Rolling practice, sitting practice…why isn’t he sitting yet! Weight bearing on his arms. And his progress is slow but steady, but leaves me feeling unsatisfied, like I should be able to do something to help him more, and I’m not doing anything right. It’s very frustrating to have so many things to do, and feel like I’m not doing anything well at all. Like his failure to make progress is my fault. I know, I know….maybe I’m just being hard on myself. But it *is* hard.
Ben has been drinking from a cup since we started solid foods with him at six months, and he does a passable job. He is great with a sippy, but recent knowledge tells us sippy cups are the devil and I”m trying to get him better at a regular cup. Sucking on a sippy, apparently, is just like a bottle, and delays speech. Maybe that is not a big deal for some kids, but for Ben it is a super big deal because his speech is delayed already. So now it’s one more thing to worry about. He tries to suck from a regular cup, and I”m trying to work with him on not doing that, it’s actually fascinating…because you don’t think about what it’s like to teach someone to drink until you have to do it. We get lots of milk everywhere. The OT also suggested teaching him to use a straw, which seems like a good idea. There are lots of ways to do this, and we’ll try some of them. I want to start with a straw because at least then he can use his own cup without me worrying about him dumping milk all over his head, or worrying about the lurking evil of the sippy cup (which he is really very proficient at). It’s very overwhelming to think about all of this, and I’m worried that it’s all very confusing for people to read all about it. But this is our day…me thinking about what I ought to be doing with Ben, obsessing over it, worrying that I’m never doing enough.
In other news…
I get a lot of people saying “you must be so happy” about Ben turning one…and I AM. But again, I am so overwhelmed with feeling about it that sometimes it’s easier not to think about it. Thinking about the fact that he is still here means that I think about how much longer he will be here, and what will happen if he’s not, and I don’t like to go there. So I just stay in the now. I think more about day to day life with Ben than his heart problems. I think more about what we’re doing and what we will do today than the past year. And I don’t think a lot about what-if’s, or whys or hows. I don’t like to think about Ben making it, because it makes me remember how scared I was when I thought he wouldn’t. I guess the upshot of all of this is that I am realizing most of all, on this one year birthday marker, that I have really achieved what I set out to do (and I think Scott has too)…we are LIVING with Ben, and doing what he needs. That is very different than watching him, thinking about tomorrow or yesterday. So yeah, I am happy, I’m sick with happy…but I’m happy every day I’m with him…watching him try new things, eat new things, do new things. I’m even, in a sick way, happy when I have to get up at two thirty to deal with poop and spit up (as I was last night), because afterwards I get to cuddle him back to sleep, sit in a rocker and think about all the things I usually shove out of my mind, and smell his hair and listen to his breathing. You can’t put that into an answer to a question like “are you happy”, because there are no words to describe it. Everyone has something like that in their lives, I think…something for which there are no words. Ben is my “no words”.
And on a lighter note, there are birthday pictures if you click here



February 25, 2007

I promise that this week there will be lots of pictures of Ben at various birthday celebrations. Scott and I are still recovering from the festivities yesterday, and we’ve been lying low today. Good thing, with the weather the way it is (Yucky). Last week we were visited by Ben’s Aunties (pronounced “onties”);


, and we had a FANTASTIC time.  Lots of time spent watching, playing, talking, and sitting with ben, as well as some side trips, knitting and lots of good food.  We had dinner on wednesday night with Grandma and Grandpa Corliss, and Aunt Karen, and Ben was in fine form.  Friday saw Ben getting a haircut for his big day yesterday.  He flirted with all the girls in the salon, which was fun for him and them.  ;0)
The party yesterday went off without a hitch.  We had such a great time, and although I didn’t get a chance to talk to as many people as I wanted for as long as I wanted, I got to talk to everyone just a little.  Ben did SO WELL….he made it through the whole day (with just a little snooze halfway through the party on Scott and I), then we went out to dinner at Olive Garden afterwards, and he ate his dinner there, flirted with the waitresses, and didn’t get cranky once.  Since his schedule and life have been so full of activity the past week, this week will be a calm one…a quiet one. 
More posting to come soon, with pictures.  🙂

Birthday Boy!!!

February 21, 2007

how you doin?


Who knew?

Champion Sleeper

February 14, 2007

…I know that this may have something to do with Ben’s health, but have I mentioned that he is the best sleeper I have ever seen? Other parents are shouting “shut up shut up shut up” at their computer monitors as I say this, but it’s true. He sleeps twelve hours at night, a two hour nap in the morning, and a two to three hour nap in the afternoon is average. This week he’s sleeping more than that. I have to watch him, because he likes to sleep in the morning and then not take an afternoon nap. Not good!!! That means this post will be short, because I need to go and wake him up so we can do a couple of errands. 🙂

Plans for the party have me all excited. Plans for our guests next week have me even more excited. We deep cleaned the house this weekend…well, sort of. Thing is, it doesn’t have that “company feel” that a real deep clean gives your house. Hopefully I”m not the only one who knows what this means…because it may mean my house is really dirty usually. haha. 🙂 Anyway. We got blinds for the windows this weekend, finally, after getting new windows a year and a half ago. I just couldn’t stand the draft that blew down my neck when sitting on the couch any more. So our windows are dressed and pretty, which is nice. I realized today while on the phone with a friend that I have given NO THOUGHT whatever to decorations for Ben’s party…so we are off to look into that either today or tomorrow. We also have to order cake from costco (yum), and get reprints of some old pictures for Melanie, one of my friends coming to visit next week. I am reprinting all of the pictures I took on the trip to Germany when we met twenty years ago,(okay, it was only eighteen years, but doesn’t that still sound like a long time?). Melon lost a lot of her “Germany stuff” in a fire earlier this year, and I want to give her my pictures. I think that Anjy (also coming to visit) is doing the same. It will be a big “remember when” love fest all week. Hooray!!!!!!

I spent last saturday at a fourteen hour scrapbook crop working on Ben’s book. More is done. (You’ll notice I said MORE, not IT). I really have the scrapbook bug after doing one of those crops…..I want to get as much of ben’s book done as possible so we can put it out at the party. We also got a copy of this book called “It’s my heart” from the Children’s heart foundation…it is a free book to families that have kids with heart conditions…and it has pictures and descriptions of all kinds of heart issues, including all of Ben’s. We will be putting that out at the party too, along with some albums and other stuff. I think Scott is working on a slide show of pictures as well.

I haven’t mentioned it yet, mostly because I have such mixed feelings, but Ben is being discharged from Hospice in a week. I know that this is incredibly good news (I mean, who gets discharged from Hospice!!!) but I am also kind of sad because Nurse Kim and Linda (the Social Worker) have really become family friends in a way too. We will miss them, but I am overwhelmed by all the feelings I have about Ben being discharged from Hospice.

I will probably be writing a lot about this in the coming days, but I cannot help thinking about where we were a year ago, where we went a year ago, and everything this past year has brought us. I can’t look at Ben this week without shaking my head and smiling. And sometimes crying.


February 6, 2007

Ben and I made a craft this morning. Which is to say he rolled on the floor, plotting to take over the world with Senior Alfonso Elephante while I sewed and glued.

Also pictures of the bread I made this weekend after the cut. mmmmm. it was tasty!

pictures here

some random things

February 6, 2007

Filtered, because the grannies that check in on Ben need to be broken in gently to the random daily musings that this journal will contain in the future. I mean, yeah, I write a lot about Ben because he’s on my mind, but there is more going on too. I think this is heading toward the journal stage and out of the updates on Ben’s health weekly stage. Eh, it’s all good.

Knitting: I need to finish this damn blanket I’ve started and never do another one as long as I live. I hate this blanket so much it’s making me sick. I need to get on with it and finish so I never have to look at it again. I should just buy these people a wedding gift and ditch the blanket. I’m not an endurance knitter, let it be said. Also let it be said that what keeps me from doing the blanket is the very nice pair of socks I’ve started, and which are almost done. yes, I even did the heel thanks to a nice internet tutorial. And it was pretty easy. I love socks. They are something that you can do in a week or so. Unless you are doing a blanket, then it takes you much longer because you keep feeling guilty about not finishing the blanket. Then there are all those other things I want to make (for myself no less, who knew) which I cannot feel good about starting until this damn blanket is done. I’m going to get on it today during naptime.

Cleaning: I need to clean my house. No, really…I NEED to clean. I started yesterday. Scott asked me this weekend if I wanted him to vacuum upstairs and I said “are you going to take the wand and do all the walls and the ceiling and the doors?” and he said “….no?” at which point I told him not to bother, and it was okay. What is wrong with me. I should have taken him up on that. But it’s okay. ben and I pump the tunes and clean like mad people. Like fiends. Like dervishes. Besides, it’s too cold to do anything else.

Tutoring: I love tutoring, except that with it and Band, I’m gone three nights a week. I don’t like that too much. We aren’t eating together as much as we used to and I’m not cooking, which kind of makes me cranky. Scott can eat pasta forever, which is good. He doesn’t get cranky about anything. One of my tutoring students doesn’t really need the help right now, which is kind of discouraging, because that’s lost income for me…but ahhh well, that’s the way it goes.

Opera: I don’t know squat about opera, but I’m suddenly fascinated by it. I got a few books from the library and I’ve been learning about it. I”m going to dig some recordings out of my Non-computer-uploaded CD box and relisten…yes, I actually own some opera highlight CDs. Then maybe get some recordings from the library. I’m starting small….Carmen, of course, and probably some Magic Flute…that sounds really funny….. I’m in a music slump right now and want some variety.

Off to cleaning and bastard blanket land. Maybe I could write my own Opera about that. 🙂

Huston, we have protien.

February 5, 2007

Victory! (At least I hope it is). Ever since the pediatrician uttered those words “I’d like to see him get some protien”, I have been trying like mad to expand Ben’s diet. He doesn’t like the meat I give him. He doesn’t like the meat in the jars. He really could care less about Beans and such. The best of these refusals is an icy look from Ben with locked lips. The usual refusal is a madly arched back, turned head, and a cry and fuss so extreme you would think he was in pain. So I finally gave in and bought him some silken Tofu. Scott and I don’t mind Tofu, but we don’t eat it at home, mostly because we eat meat, and I don’t know how to cook it properly. But I took out a spoonful or two of the stuff, whipped it up with the hand mixer, and used it to mix Ben’s cereal, with a little formula. Then heaped apple sauce on the top and he ate the whole thing. If this is what I must do, so be it.

We spent the morning cleaning…and there is more, oh so much more, to do. But there are so many other things I would rather do. This weekend was spent traveling around looking for blinds (we did find some, but not where we wanted to.) We were hoping to just be able to buy some premade blinds, but all of our windows are custom, so we had to order custom blinds for all the windows. It will go a long way to keeping all the drafts down. I made no-knead bread saturday and sunday (it took fourteen hours to rise, hence two days), and it was DELIGHTFUL. I’m not a bread maker, and this was so easy and delicious. Then yesterday we went to Rick and Karen’s for the stupendous bowl, or whatever the heck it is when large men bang into each other on grass for extended periods of time to prove their manhood. Ben is so much better about visiting and traveling….his schedule is a little more flexible and he is a better traveler overall. Makes life fun, that does.

Cold here, we are staying inside unless we are forced to go out. Which is good, because there really is a lot to do around the house here. 🙂