Musings of a Marfan Mom

The Rest of Our Mini (Doctor) Vacay

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Last weekend we traveled a few states away for doctor appointments Baby J and me. Our first day in town we got to meet up with some Marfriends.

Monday morning we were up super early to see the orthopedist. Both J and I got spine x-rays and he was a trooper! I was pleased to hear that my spine has stayed the same over the past couple of years. J’s spine is straight, which is awesome. Then we took off his AFOs so the team of students could watch him walk, and J took off down the hall with his little Marfan shuffle! Some of you parents know what I’m talking about: slightly hunched over, head bent forward, elbows thrust backwards, rocking side to side a bit. Adorable! I should post a video of it sometime! Anyway, the doctor said generally he is not a fan of AFOs and he believes J’s pigeon-toes will correct themselves as he gets taller, but that he’d write a prescription since we think they are helping him not fall as much. Also, we had to agree to use the AFOs in conjunction with physical therapy so that the AFOs would only be short term solution. That’s always been on our plan though!

The rest of the day we checked out an aquarium and wandered around the city. M had some trouble adjusting to the aquarium and we almost left, but eventually he came around. J *really* loved petting the big cockroach a volunteer was showing off in the kid area. He kept crying to go back again and again!

Ewww bugs! Baby J does not get this love of creepy crawlies from me!

We capped the evening off with dinner with some of my college fraternity (Alpha Phi Omega!) brothers. I haven’t seen some of them since they graduated, and now they have cute babies!!!

Yes, I know I used the term "brothers" and there is only 1 guy here, but APO used to be male fraternity and we opted not to change the terminology.

Tuesday was cardiology, definitely the more stressful of the two days because stakes are so much higher when it comes to the aorta! I have to say, the staff was FABULOUS! Somehow I hadn’t gotten scheduled for an echo (?!) but they immediately took care of it. The plan was to do me first while a nursing student held on to J, but he would have NONE of it. His fear of anyone but Mark or me is getting *really* old! J was inconsolable even just holding my hand! He would only calm when he laid across my chest.

Teens, I know you might curse your pectus excavatum (I did!). But some day, you may have a little baby who will be most happy curled up there and then that hole in your chest won’t be quite so bad, after all!

As you can imagine, that positioning makes an echocardiogram REALLY difficult! The tech was really sweet though and managed to do the echo around J laying on me; we just shifted him from time to time. Eventually he fell asleep next to me and stayed groggy enough that we could do his echo with no sedation. Yay!

Our nurse practitioner was actually mine here in Ohio from the time I was a young teen until just before I got pregnant with the Menininho. I miss our team in California but it felt a bit like coming home to be back with this CNP (who feels like family to us) and SO COOL for her to be seeing J now. She is one who helped me feel comfortable having biological children and it was amazing to finally be able to introduce her to J. :-) Plus, she hadn’t seen M in almost 3 years!

Also amazing were our overall reports! Both of our aortas are stable, which is something I am always grateful to hear. J is developing pectus carinatum but it’s really slight now…I don’t think it will be too noticeable till puberty. That was no surprise to us as I first photographed something going on with his chest almost a year ago, though Mark & I went back and forth over his chest was going more in or out. Our CNP also requested that J have an intensive food allergy screen. Food allergies are associated with Loeys-Dietz syndrome, but although we are genetically confirmed to have Marfan syndrome I do have some (benign) LDS features. So, given that J has had inexplicable diarrhea off and on for the past couple of months and won’t eat many foods, our CNP figured it was best to make sure there aren’t any allergies going on beyond the dairy allergy/intolerance.

We go back in 6 months for another echo for Baby J; I don’t need another till next summer.

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6 Comments

  1. SO we will see you again in 6 months!?!?!?! YEA!!!! Glad to hear “stable” was said many times at the appointments — its my favorite status. :)

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    marfmom Reply:

    Yep! Not sure how it will all play out yet, just that it will almost certainly be just J and myself, rather than all 4 of us.

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  2. I love the word stable. If Baby J is anything like The Boy in no time at all he will almost enjoy having his “slime” test. However The Boy still doesn’t enjoy the spaghetti test (ECG). One day LoL
    Happy to hear it all went so well!!

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    marfmom Reply:

    So. Much. Slime!

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  3. So many tests! I am glad everything went well!

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    marfmom Reply:

    Thanks!

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