Musings of a Marfan Mom

Doctor Appointments and Yard Work


Last Wednesday was the kind of busy I don’t want to repeat. Baby J and I both had our eye exams (lenses still intact for both of us; there had been a question over my right lens at my last exam so I’m glad to know it is, in fact, intact). The new doctor was nice but the staff got on my last nerve. There were multiple issues, and the nurse kept snapping at J for wanting to touch things (um, it’s the pediatric wing…how about you kid-proof your exam rooms? I can’t hold him while I’m getting my eye exam.) and then looked at me and asked “so, does he have anything wrong with him? Or did his old doctors just say he has Marfan because you have it?” There are so many things wrong with that question! I was really peeved and snapped back “They didn’t have to assume. He has a positive genetic test result, so yes, he really does have Marfan. Also, if you look at his face you’ll see he has all the classic features of Marfan syndrome. In fact, his former eye doctor actually used him as the poster child to teach med students what to look for to suspect Marfan syndrome.” I wanted to add how about asking for his medical history before insinuating, you twit but I refrained. Good thing we like this doctor or I’d never go back.

baby after an eye exam

Baby J, sporting the post slit lamp exam shades

A few hours later we went to another hospital for J’s FEES test. That’s where they stick a tiny camera down his nose all the way down his throat to see what happens when he nurses. Since he still chokes sometimes when nursing they wanted to be sure he wasn’t aspirating or having deep penetrations. If he was, I’d need to go to pumping instead. Poor baby refused to nurse! I tried and tried, but he was just too mad about the camera. The speech therapist and doctor conferred and decided that since his throat looked good (no pools of fluid, voicebox closes correctly, etc.), he’s no longer choking every day, and that he’s only been really sick once, that he is most likely not aspirating. Even if he’s having deep penetrations, the speech therapist said it’s the breastfeeding keeping him healthy so that we should continue with it for as long as we want to, and to come back and see her in a month. I feel really lucky that we’ve been able to keep nursing as long as we have and I do credit J’s overall health to it. Between having Marfan, having a diaphragm that only half works due to a large eventration, and most likely aspirating (at least for a time), he “should” have had other infections besides the one case of RSV. Very grateful he hasn’t!

Beyond the appointments, Mark and I were able to get some good yard work in this weekend! He bought a lawn mower, mowed the lawn, and re-seeded some big chunks of our lawn. My pet project is this pond:
fish pond
It used to have fish in it, but they died after the previous owners left (there was a 4 month gap between when the owners moved and we bought the house). Right now, the pond is disgusting. We can’t tell how deep it is because there are so many rotting leaves at the bottom. The water is black and it smells like pig dung (fun fact: my dad, a former rancher, taught me how to identify farm animals by the scent of their manure and we used to debate which smelled the best, which grossed Mom out to no end). I’ve begun the arduous task of trying to scoop out all the leaves with a pool skimmer. Then, Mark will drain most of the pond bucket by bucket, we’ll fill up the pond with water from the hose, let it sit a day or two, and then drain more. There are 3 frogs living in it right now, so I don’t want to completely drain the pond and drive them off. I’m sure this project is going to take a few weeks, especially as the weather dropped about 30 degrees today, but I’m excited about it. I can’t wait till we have fish living in there! I just know that M is going to love it. :-)

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  1. Super cool in the specs Mr. J!! I think I have 3 pair of those in my car at all times – they work better than sunglasses on really bright days ….. and if any passengers don’t have their suns, they get to wear a pair!!


    marfmom Reply:

    Hahaha I love that, Rita!


  2. Love the fun fact… hahaha. Angry for you about the ophthalmology nurse. GRR. Can’t wait to see pics of the completed pond project! Enjoy!


  3. J is rockin those shades! Sorry that some people are so lame. Also, I got the fabric for the car seat cover I’m making you and I think it’s AWESOME! Can’t wait to finish it and get it sent to you. I promise it will be on time! I have that and two other projects to wrap up and then I’m headed to the post office, hopefully within a week or a week and a half.


    marfmom Reply:

    Cool! I can’t wait to see it! Thanks again :-)


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