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 […]
I can’t smell skunk, but apparently I can smell Klebsiella Pneumoniae in my son’s pee.
Filed Under: Frequent Flyin' ar the PCMC, Life With Special Needs Tagged With: easy button, fistula, imperforate anus, klebsiella pneumoniae, special needs parenting, uti
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 […]
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Filed Under: Frequent Flyin' ar the PCMC, Life With Special Needs Tagged With: audiologist, audiology booth, ear tubes, hearing aid, sound booth, special needs parenting
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 […]
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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 […]
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Filed Under: Frequent Flyin' ar the PCMC, Hospital Frequent Flyer, Life With Special Needs Tagged With: heart rate, Masimo, oxygen saturations, pulse ox
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 […]
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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 […]
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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
