Musings of a Marfan Mom

June 7, 2009
by marfmom
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Houdini

No sooner did I turn my back after laying Menininho in the bassinet for the night did Mark point this out to me. I thought I’d swaddled him tightly, too! Good thing we had the camera nearby!

June 3, 2009
by marfmom
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Diapers and Bread (but not together!)

At the risk of sounding like TAMN, I feel the need to be excited about/document/get advice from fellow bloggers about my homemakery doings. I know I’ve said it before, but being home all the time is still a difficult adjustment for me, even though I enjoy spending all the time with Menininho, so I’ve decided to try to throw myself into homemaking and see what new skills I can acquire (none of these new skills are going to include organization because I can admit there are some things I am just never ever ever going to be good at and that is one of them!).

I finally got Menininho started on cloth diapers this morning. The reason for the delay is that I’ve had trouble finding washing soda (it’s not at Walmart or Safeway) so I had to order it from Amazon and if it doesn’t show up this morning, I told Fed Ex I’m not paying for the shipping. I could *really* use some feedback on folding the diapers. I looked at a few diff. sites on how to do it and decided the “newspaper fold” looked easiest (I’m using Chinese prefold diapers). However, none of the sites I looked at really showed how to fold the diaper with the baby in it. Check out my first attempt!

The second time around I did a little bit better:

However, even though the diaper is for a 15-30 lb baby, and Menininho is not yet 15 lbs, I’m barely able to fit this diaper around him. I must be doing something wrong. Thoughts? I just got him up from his morning nap and the diaper did leak. His right side is soaked through the diaper (not the cover, but the cover didn’t cover it). He also pooped through the diaper. 4 diaper covers may not be enough, after all…


Now, on to bread. We got a breadmaker from one of Mark’s labmates when we got married and I’ve never used it. I had every intention of doing so when I was pregnant, but didn’t happen. So, Monday morning I decided “Today is the day!” and scoured Anne Bean’s blog for the best way to make wheat bread. She is pretty much my DIY healthy cooking hero. If you’re interested in the recipe I used, plus loads of other whole wheat recipes, making your own baby food, doing compost, etc., check out her blog. You can find the link to her whole wheat recipes HERE. It’s worth noting that her whole wheat bread recipe makes a 2.5 lb loaf. My breadmaker only goes up to 2 lbs and Anne was kind enough to send me an adjusted copy of the recipe.

I wasn’t able to find all the ingredients for the dough conditioner that Anne suggests, so I left the conditioner out. The bread is a little dense, but still tastes really good, if I do say so myself! I was so excited to try this out that I stayed up till 12:30 with it. I felt so domestic eating a slice of my homemade bread with some of my homemade peach jam on top, haha! Here is the finished product!


I’m planning on just making all our own bread from now on. I saw Anne’s cost breakdown and making my own is going to be a LOT cheaper than buying.

June 2, 2009
by marfmom
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Memorial Day

We got invited to a Memorial Day BBQ. I was really thankful for the invite, as we don’t know many people yet. It was a potluck, so I brought some lemon cupcakes with chocolate frosting.  But, with the strawberry shortcakes someone else brought, my dessert wasn’t too popular!

After eating, I sat in the living room and made generic chat with the other women about gardening and babies. That was OK, until the president of the women’s service organization came up to Menininho and started playing with his feet and loudly cooing “Oh, poor Menininho! Your parents tried to give you diabetes and that Marfan disease! But you didn’t get those! No! You didn’t get those!

My first reaction, a knee jerk one, was to say “It’s a disorder, not a disease. There’s a difference; get it right.” My second reaction was “Oh my gosh did you REALLY just say that? Because on what planet is that appropriate? My guess is Planet Offensive.” But, I bit my tongue and said neither of those things.

I totally respect that some people might not understand or agree with why Mark and I were willing to risk passing on Marfan to our child.  I would never try to push another Marf into having a baby just because it was the right decision for our family.  All we ask for is the same respect.  It boils my blood that someone would insinuate that I TRIED to or wanted my baby to be ill.