Musings of a Marfan Mom

So Much to Do, So Little Time


The next 6 weeks or so are going to be a pretty wild ride over here.

Last week, we bought our first home (pending the final appraisal). It still hasn’t sunk in yet, that Mark & I are going to be home owners. The house is really cute and in a great neighborhood. I’ll definitely post pictures once we’re all moved in!

In 4 weeks, we’re moving to Ohio. Here’s what has to happen in those 4 weeks (in no particular order):
– Clean out closets of everything we’re NOT taking to Ohio
– Pack
– Another sleep study for Baby J
– Complete M’s IEP testing and IEP meeting
– Baby J’s IFSP testing and IFSP meeting
– Wrap things up with various doctors (pediatrician today, GI, pulmonology, etc.)
– Cram in as many therapy appointments as possible for both boys
– Throw a very early birthday party for M at his school
– My college roommate and her husband come visit
– Christmas and New Year
– Autism moms’ holiday party
– Veterinary preparations for the cat to travel

So. Yah. A little stressed. :-p

I’m feeling better now that we’re in contract on a house, but I’ll feel a LOT better once everything is squared away with Baby J.

As you know, we’ve been trying to get his reflux under control for too long. We met with his GI on the 18th, who agreed that J needed an upper GI test. That was completed on Friday and let me tell you: other than the sleep study, that was the worst test he’s been put through. I wanted to cry, he was so uncomfortable! Anyway, both the radiologist and pulmonologist (who we saw today) said that J’s reflux can be treated with a nissen fundoplication, since his medications aren’t working. The GI was supposed to call me on Friday to discuss options but he hasn’t. In fact, it took him 2.5 weeks to call in the referral to a feeding specialist for J (which was his suggestion in the first place), such that there are no available appointments left before we move. Grrrr!

Having had a nissen myself, I have mixed feelings about this as a solution. I’m organizing them into a post because I have a feeling that the nissen is a reflux solution that is going to be presented to many a Marfan-family and perhaps hearing from someone who has grown up with the procedure will be helpful. Look for it soon! (And cross your fingers that the GI gets back to me soon; if we elect to move forward with the nissen we’d like to do it before we move.)

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  1. Fingers crossed! That is an incredibly busy month and a half. Good luck with the move and getting settled.


  2. First of all if there is anyone who can get all that done (not just get it done but get it done thoroughly) that would be you (and yours). Just thinking about it makes me tired which brings me to the question; when will you be sleeping? I know that you will make the best, most informed decision for Baby J. Remember to take care of yourself and for Mark to do the same. Hugs!
    PS I can hardly wait to see the pictures


    marfmom Reply:

    Sleep? Sleep is for the weak lucky.


  3. Our baby boy has reflux as well (dont know about his Marfan status yet). He has been on meds for 3 months now and they just started to really work. Hoping he grows out of this reflux. Keep us updated on Baby J’s progress.

    Oh and as you get ready to move…..I happen to work for the movers trade association — visit for mover lists and how to hire and prepare for the move!!!!!


    marfmom Reply:

    Our doctor told us that the meds should work within a couple of weeks. We did see an improvement in about 2 weeks, but it tapered off. Now the doctor says the meds need more time, but I’m not sure whether I trust him on that.

    And thanks for the info on! I’ll be sure to check it out!


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