A short update about BenFun

New updates on Ben! Walled Lake Schools called last week and we have set a schedule for Ben’s Physical Therapy. We start next monday and will start going every monday morning for the next couple of months. I’m excited to hear what they think about how he’s doing, because I think he’s made so much progress this summer. It will be fun to see him get some new physical input. After watching him at dinner tonight, I am pretty convinced that he has the STRENGTH to roll over, but not the coordination. He really wants to move, but he doesn’t understand how to make that happen. Today when he was playing with his friend across the street he lifted his butt and tucked his knees underneath him…thinking it would propel him forward, probably. It’s so neat to watch. He has also started turning in his crib…we’ll go in to get him in the morning, and he’s 180 degrees from where he was the night before. He’s scooting around little by little. Time for rolling! Another neat thing that he is doing now: he is soooo much more aware of his world. He follows the cat across the room, and no matter where he is he wants to know where Scott and I are…he cranes his neck around to find mom and dad. Ben is definately a “take it all in” kid….he interacts with his toys and with people, but he really doesn’t want to miss anything that is going on anywhere, and has to be able to see everything. It’s fascinating to watch!

Also big health updates on Ben. He got his first round of immunizations this week. He really really didn’t like getting held down to get a shot…but who does? Ben cried when he got them, then slept for a night and a day…but did pretty well all things considered. We took him at night so that Scott could meet the doctor too. The Pediatrician had already talked to Ben’s cardiologist and hospice, so he knew a little of Ben’s history. We go back in six weeks to follow up and have the next round of shots.

For the past couple of months, Ben has been on morphine. This is to help dialate his blood vessels and so his heart can work more efficiently at pumping blood, mostly because of the issue his body has that mixes all of his oxygenated and nonoxygenated blood together. The problem with this medication, even though he is on a very very low dose (lower than the minimum dose for his weight) is that he has major problems pooping on it. There’s just no delicate way to put that, because it’s a major issue. SO…this has gotten to be a bigger deal since we have started solid foods (although eating prunes for breakfast seems to help!). We have spoken (though Email) with Ben’s cardiologist about changing this, weaning him off the morphine, and observing to see if his symptoms are still stable or if there is another medication that can alleviate the symptoms with out the addictive and intestinal problems that morphine has. Originally he was on this, also, because we were basically making Ben comfortable, thinking that he really just needed comfort care because he really wouldn’t be here that long. The dose was to be as needed….and then he needed it, but he has been here much longer than planned. SO….long and short….Ben is due for another trip to the cardiologist to see what’s up with his heart and to adjust his medication. Not sure when the appointment is yet, but we’ll make it next monday and then look forward to the date. 🙂 We Randall’s love us a trip to the cardiologist.

Some people have asked if some kind of record will be taken and recorded about Ben, since he’s one of a kind…and I asked the Cardiologist this. He is planning on writing a paper on Ben’s case and including some pictures of Ben’s heart. I think that this is very neat…but I also hope that there is not another family that ever has to make use of this information. Who knows what will happen, though.

I think that is all for now.

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This technically Ben’s third haircut…but since we only made it halfway through the second before he started screaming, it’s really just the second half of his second haircut. He isn’t sure what to make of all this haircutting…but he knows that mom and dad get really excited about it.

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Friends with the same hair are the best.

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Ben is either trying to pick up a date or pose for posterity. Either way he’s handsome.

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2 Responses to “A short update about BenFun”

  1. xosmurfzruleox Says:

    Thats for sure.
    definitely a major hottie. =)

    i absolutly LOVE LOVE his hair. my sister and I were both completely bald until we were like 2. how unfair. haha

    glad to hear things are going well, how’s the decision not to go back to school working out??
    Good i assume =) i’m taking a biochemistry class before i start into my actual chem 141 class, and it’s so stupid.. haha these professors come in, and talk about their portion of the biochem. major. so they talk all scientific like about fruit flies and whatever else they specialize in, and then we have to write a paper on it. I miss your way of teaching. hahah something i suppose i’ll just have to get used too- you should probably look forward to my ridiculous questions around jan. when i get into chem. hahah

  2. Anonymous Says:

    Pictures

    What a cutey!!! He looks more like both of you every day. In picture 1 he looks like Scott but in picture 3 he looks like Kim. In any case he is a handsome fellow – and I **love** the hair.
    ———–
    Love
    Mary Ann

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