We have the results from Namine’s heart monitor, and they’re mostly good.
There was a discussion on one of the Facebook groups I belong to on how and when to educate one’s child on surgery. I responded there with a simplified version of what follows, but I have more to say (as I usually do).
Namine saw her cardiologist for a heart checkup.
Jessica, Namine, and I gave another talk to the bioengineering class at Marquette University.
Namine was complaining of chest pains this afternoon, so we took her to the ER. Long story short, she’s fine and we don’t know why she was in pain.
We had to go to the hospital so the pharmacy could refill Namine’s medication.
Jessica, Namine, and I were invited to speak at the Children’s Hospital of Wisconsin medical college.
Namine’s heart continues to do well post-Fontan.
The dark underbelly of the special needs community is the dislike of the label of “special needs” itself. That, combined with the fact that many able-bodied people are writing and speaking for disabled people (both by professionals and caregivers), can be a recipe for disaster.
Losing the Affordable Care Act would be devastating. Without it, my daughter would most likely be dead.