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… [Continue Reading]
EKGs, RSV and other letters I hate
Filed Under: Frequent Flyin' ar the PCMC, Life With Special Needs Tagged With: chronic lund disease, down syndrome, medically fragile kids, pulmonary hypertension, RSV, special needs parenting, virus
Feeding Therapy
I’ve talked before about the great play dates that Parker has been having with the neighbor girls behind us. Saturday was another fun experience. Then came snack time. Parker’s doesn’t eat by mouth. I have to tell you that sitting at a table with friends who are eating treats while your Mom pulls up your… [Continue Reading]
Filed Under: Frequent Flyin' ar the PCMC, Holding On Tight To My Faith, Life With Special Needs Tagged With: dysphagia, feeding threrapy, g-tube, tubies, when your child can't eat
Lab Test Results
Lab tests results meaning have a way of putting a wee bit of terror into this Mama’s soul. While we no longer need to go every month, I still find myself thinking of big pretty bottles of nerve medications the day we are scheduled to have 6 big vials of blood sucked out of our… [Continue Reading]
Well, Puke
I can’t believe it. On Wednesday our substitute nurse received a phone call from her babysitter letting her know her kids were throwing up. Fabulous. About an hour ago Parker hurled from the very depth of his toes. You can tell by the smell that it is the sick kind of puke, not just the… [Continue Reading]
Filed Under: Frequent Flyin' ar the PCMC Tagged With: Norovirus, Puke, stomach flu, throwing up over a Nissen
Tracking Health Patterns
I have the medical binder for Parker, complete with pages of history, meds, vent settings and the like. Now I’m taking notes on a daily basis in my quest to keep Parker healthy. Tracking health patterns can help prevent problems before they get out of control. I wanted a simple system that I could… [Continue Reading]
Filed Under: Frequent Flyin' ar the PCMC, Life With Special Needs Tagged With: healthcare, managing health care, medical binders, tracking health patterns
Sleep Study Nightmares
In the mood for some good old fashioned misery? Then a Sleep Study is just the ticket! Packed with frustration, pleadings, and prayers that all the funky stuff you’ve witnessed while your kid sleeps shows up during the night someone is actually there to RECORD it. It begins with having to lug up every… [Continue Reading]
Filed Under: Frequent Flyin' ar the PCMC, Life With Special Needs Tagged With: obstructive sleep apnea, primary childrens hospital, sleep apnea, sleep study
