February 22, 2011
by marfmom
13 Comments

Baby J Update

Time for an update on Baby J’s big Marfan appointments.

I finally got a copy of his complete echocardiogram report in the mail. You can imagine how I felt to learn that he has a patent foramen ovale, which is a small hole in the heart. Now, I am familiar with PFOs and they are extremely common and basically harmless. I’m not worried about the PFO. It is likely that it’ll close on its own by J’s next echo, anyway. What I am mad about is that I learned of it on his echo report. This is really something his cardiologist should have mentioned to me at the echo appointment itself. I also discovered that I was correct about J’s aortic root measurement (I read it as I watched the tech do his echo). It was not even close to the number the cardiologist made up. Argh. J’s root is currently on the border between normal and enlarged. I’m not overly concerned, especially since he had a large growth spurt shortly after the echo, but again: I should have been told the actual measurement and not some number the cardiologist pulled out of his head to try to pacify me into not asking questions.

Anyway, outside of that, J had his first ophthalmology appointment last week. I was much more nervous about this visit as I noticed that he isn’t tracking or focusing. J wasn’t a huge fan of the lights in his eyes, as you can see below.

I’ll tell you what I was a fan of though: his doctor! She is fantastic! At first she began to explain Marfan vision to me in terms of the basics. When I explained my background and volunteer work with the NMF though, she began to talk to me more like a peer, which I really appreciated. And if that wasn’t great enough, turns out she was a protege of THE Marfan ophthalmologist, so she really knows Marfan eyes.

It’s really amazing what they can tell about eyes so early. Turns out J’s lenses are intact for now (though the doctor couldn’t get a good look at his bottom lenses, which is normal for his age), which is terrific. He is a bit nearsighted, but doesn’t need glasses yet. I was right too, in that Baby J is delayed in his ability to focus his sight on an object/track objects. Although his doctor normally sees her patients with Marfan every 4 months, we have an appt. to go back in 8 weeks if he doesn’t catch up in the meanwhile.

No more Marfan appointments for J until his geneticist appointment at the beginning of April.

February 21, 2011
by marfmom
6 Comments

Our Valentine’s Date

Ever have one of those dates that just didn’t go quite the way you planned? That was our Saturday night.

Mark and I don’t go out very often, same excuses everyone has, but we make sure to hit the special occasions, even the ones arguably created by Hallmark.

We (I) secured a babysitter for Valentine’s weekend, but last minute she had to cancel and asked if we could go out the next weekend instead. Talk about foreshadowing!

So, this Saturday came around and the day was booked: annual celiac testing for M and trying to get me fitted for compression stockings in the morning, followed by nap time and a party for M’s playgroup. We left for the babysitter’s when we were supposed to be arriving there. Whoops.

Mark made good time though, and we got to the restaurant only 10 minutes late for the reservation I am very glad I thought to make. However, the restaurant was so packed they were running behind and we weren’t seated till a half hour after our reservation time. This meant sitting, freezing, by the front door (it’d been in the 40s and pouring rain for 2 days), with a hungry, screaming baby.

Now, the perk to a crowded restaurant is that while it was too loud for Mark and I to hear each other well, it was also loud enough that people probably couldn’t hear Baby J hollering either. But no sooner had we been seated and I’d situated J nursing, then I looked down and saw the huge puddle of bright yellow poop in my lap.

Yep: My child who never has a blow-out diaper had managed to shoot poop out of the top of his pants all. over. my. skirt. without actually getting HIS clothes dirty. That, my friends, is talent. And of course as soon as Mark had changed his diaper, J spit up all over himself. And of course this was the ONE TIME I hadn’t packed a change of clothes for him.

That last disappointment came with our food, when my fish came out tasking like Van Der Kamp fishsticks.

Now, you might read all this and think wow, was there anything redeeming about the place we’d picked to go out on one of our rare dates? There was!

Just as we were preparing to pay our bill and leave, the manager approached our table with a sundae in hand. “We made one too many sundaes for another table,” he said. “I was wondering if perhaps you two would like to split this one for free.” Would we ever! Mark and I agreed it was the best tasting sundae we’d had in ages and totally made up for the rest of the evening.

What “interesting” dates have you been on?

February 18, 2011
by marfmom
1 Comment

Friday Favorites

Welcome to Friday Favorites! If you’re new to the blog, here’s how to play along. Every Friday I devote my post to showcasing awesome blog posts by other bloggers that I’ve read over the past week or two. I invite you to do the same and link up here, OR just link up directly to those posts you’ve loved this week. This is any easy way to share the love and find great new blogs.

Lots of great blog posts this week! Here they are, in no particular order:

If you run a Facebook fan page, Facebook Page Redesign: 10 Things Admins Should Do RIGHT NOW by David Griner is a must-read article explaining how the new format works. He has answered some questions in the comments as well. Overall I like the new design (though I haven’t “upgraded” to it yet), except that it will no longer show posts in chronological order. This is going to be really annoying.

You might remember me telling you about my friend Kristine and her daughter Cora around this time last year, for CHD Awareness Week. Recently, Kristine had the opportunity to testify before her state legislature in support of Cora’s Law, to make pulse ox testing mandatory for every newborn in the state of Indiana. I am so proud of her! Love is a post about what she’s learned from this recent experience.

Anyone catch the Dr. Oz segment on autism? The pediatrician who wrote Dr Oz: Autism, Fear, and “Good TV” summed up my reasons for choosing not to watch perfectly. We need to broaden our focus of conversation and research on the causes of and treatments for autism. I, for one, and interested in the genetic markers being discussed (Mark and M will be tested for those in April), as well as in building up resources for adults with autism, of which there are precious few.

Our Life is Not a Movie or Maybe by Amy is a really sweet post about how she met her husband (over and over again!). Talk about knowing that he’s the one!!!

Finally, I loved this post about being biracial from Grace of Glitter and Dinosaurs: Miss Grace’s Disgrace, entitled My Son is Not Hawaiian. It’s beautifully written and resonated with me as someone who is both Caucasian and Latina.