Musings of a Marfan Mom

For the past two years, we’ve had to thicken almost all of J’s drinks due to his dysphagia. No explanation for it other than “Marfan syndrome floppy tissue” could be determined, but Marfan syndrome was enough of an explanation for me. His speech and feeding therapists were supposed to be helping him strengthen his swallowing muscles but they were more concerned with his speech and other feeding issues, so it has remained unaddressed.

We were hoping that by now J would outgrow the dysphagia on his own and decided to do a repeat swallow study, just as he’s had them the past 2 Septembers.

J was fine until we walked into the fluoroscopy room. It looked way too much like an OR for him and he started to cry.

For his other swallow studies, I’ve been the one to feed him. For whatever reason the speech therapist this time would NOT let me near him, so that was stressful. I think he would have done better with everything if he’d been able to see me and have me comfort him, but at least the test was over fast. He only had 2 penetrations with thin liquids, and that is within normal limits. That means…

NO MORE THICKENER!!!!!!!!!

I’m supposed to hold onto it for a little longer to see if J gets multiple respiratory infections this winter, which would be a sign of aspiration, or if he starts choking a lot with drinking again. If either occur, we are to go back to thickening his drinks. But in the meanwhile, I’m excited to see lots of this:

It is amazing what a difference such a small change makes in our lives. No more having to carry Simply Thick packs in every purse. No more making sure to have a special water bottle wherever we go. Hooray for good news!

What’s your recent good news?