Musings of a Marfan Mom

Big Day


Please send good vibes today! This morning I’ve got the big IEP meeting for the Menininho, where we set up what therapies he’ll be entitled to and what his goals will be for the next year. Then this afternoon we meet with Dr. P to get the final word on whether J can come off oxygen or not.

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  1. Good luck today! We just scheduled our IEP meeting for Grace for this year as well. Fingers crossed for J’s appointment today!


  2. I’m on it! Sending lots of good vibes.


  3. I know all of your friends are sending good vibes to you and your sons everyday, however we will definitely ship you some extra. Be strong and remember no one knows your eldest son and what he needs more than you. Be that aggressive mom you know you can be. And as for oxygen, hopefully it is great news. But if it isn’t, remember that it is only a temporary setback. It took us a few tries before we ditched the o2 habit, but it does happen. Hopefully today will be that magic day!


  4. It’s gonna be a good day! I just know it!


  5. Enjoy this picture of a cute J. This picture has nothing to do with the subject being discussed, nonetheless, it is a cute baby, and therefore its existence is justified.


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