Update from a Down syndrome Mama

The older I get, the faster life zips by.  I think I spent half my life hoping time move quicker and now I’m spending it wishing it would slow down. There has been so much going on.  I thought it would be a good time to offer an update from this Down syndrome Mama. There’s […]

I can’t smell skunk, but apparently I can smell Klebsiella Pneumoniae in my son’s pee.

I can’t smell skunk.  Seriously.  Oh, if we were to run over one and it stuck to the bottom of our car I might be able to make the scent out while everyone else was hurling their donuts.  But apparently I can smell Klebsiella Pneumoniae in Parker’s urine when others can’t. I wonder if that […]

The Great Hearing Aid Chase

A year and a half ago Parker had a sedated ABR.  The news was surprising at best.  Parker’s hearing in his right ear was severely damaged.  His left ear not as bad, but still not as good as his newborn hearing test had shown.  We were given the name of an audiologist and told to […]

Alternative Funding Sources for Special Needs

Let’s face it.  Kids with special needs are expensive.  It doesn’t matter if you have insurance or not.  Cause you can pretty much bet that there’s going to be a lot of somethings that your insurance ain’t going to cover.  Expensive things.  I’ve lost count of how many parents who have posted asking for help […]

Living by the pulse oximeter

Several times a day and all night long Parker is hooked up to his pulse oximeter.  This lets us know how high his oxygen concentrations are (needs to be over 95%), and where his heart rate is at. We’ve learned that by keeping a close eye on Parker’s pulse oximeter we can tell if there […]

EKGs, RSV and other letters I hate

I should have known last night when Parker climbed up into my lap and promptly zonked out that something was up. My kid that is constantly moving at the speed of light, slowing down enough to fall asleep by 7:00 p.m. We’ve been dealing with lots of mucus and super junky lungs. This morning Parker […]