Praying for Parker

It’s a Wonderful Journey

It’s been hard. At times it has hurt. It’s been scary. It’s been bittersweet. At the same time the life that the birth of our youngest son has introduced our family to has become the most remarkable of journeys. Mothering Parker has...

Published Fri, Dec 02 2011 8:43 AM by Praying For Parker

Filed under: down syndrome, Life With Special Needs

In Search Of Medical Supplies

I posted on our discovery that because Parker is fed a blenderized diet, Medicaid in Utah no longer believes that he qualifies for formula. Because he no longer qualifies for formula, he no longer qualifies for feeding supplies, even though he takes that...

Published Tue, Jan 07 2014 4:09 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, The HIGH Cost of Health Care, Life With Special Needs, Fisher Paykel, Joey Kangaroo Pump, mini one buttons, Shiley cuffed trachs

Medically fragile children.

I can’t even count all of the times we’ve had to pull Parker out of cracks that could have easily cost him his life if Reed and I hadn’t been diligent and the Spirit so adamant in demanding our attention. It’s a common pitfall...

Published Tue, May 27 2014 9:27 PM by Praying For Parker

Filed under: Advocacy, Primary Childrens Hospital, medically fragile children, Nissen, pulmonary hypertension, reflux, aspiration, Life With Special Needs, g-tube, parenting kids with special needs, mother's intuition

Down syndrome and weddings.

We had quite the sick summer. In April, Parker had surgery and about a week after developed the pneumonia from hell. It’s October and even now he hasn’t regained the weight he lost after being sick over 4 months straight. McCall was getting...

Published Fri, Oct 09 2015 10:53 AM by Praying For Parker

Filed under: down syndrome, Special Needs, Life With Special Needs, Family and Friends, special needs parenting, weddings

An Abudant Life

Being Parker’s Mom has taught me a lot of things. To be truthful, some of the greatest lessons I’ve ever gleaned have come from being the Mom of a medically fragile child with special needs. Like how it is untrue that in order to live an abundantly...

Published Sun, Nov 08 2009 6:54 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, A Day In Our Life, Fantabulous-ness, Garden Goddess

Sweet Dreams

A Mom of any medically fragile kid understands the simple joy of looking over at the sat monitor and seeing this: Parker’s oxygen sats are 99%, while his heart rate is a very sweet 58. He’s on his vent and to make things even better, his oxygen...

Published Sat, Oct 24 2009 6:32 PM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, A Day In Our Life, Fantabulous-ness

Discount School Supply: A Giveaway!

It’s no secret. I love the stuff I get from Discount School Supply. And now, thanks to the great folks over at DSS, I can give one of you the opportunity to see exactly what I’m talking about! But first the the legal-eze: I did NOT receive...

Published Fri, Jan 15 2010 8:19 AM by Praying For Parker

Filed under: Uncategorized

A Giveway! Mama K’s Aromatic Play Clay!

You know that at our house we are all about the tactile learning. Hands on. Interactive. Using as many senses as possible. There are lots of play doughs on the market. But I’ve had the same issue with everyone I’ve tried. They stink. As in...

Published Sun, Feb 20 2011 10:21 PM by Praying For Parker

Filed under: Special Needs Homeschooling, Stuff We LOVE!, down syndrome, Reviews and Giveaways!, tactile learning activities, homeschooling a child with special needs, Mama K's Play Clay

Have you met Punky? She has Down syndrome too.

Punky lives in Ireland. Like Parker, she was born with Down syndrome. Unlike Parker, Punky is the star of an original animated TV show which tells stories from Punky’s everyday life. My first thought after meeting Punky? I sure wish Parker had Punky’s...

Published Mon, May 23 2011 10:11 AM by Praying For Parker

Filed under: Advocacy, down syndrome, Special Needs, Punky

Parker Loves Gam

Most of Parker’s first years were spent in my arms sitting in a rocking chair inside of his ‘safe room.’ Sick far more often than he was healthy, we spent much of the time reading books. Parker wouldn’t allow me to turn the last...

Published Mon, Feb 13 2012 6:23 AM by Praying For Parker

Filed under: pulmonary hypertension, Family and Friends, Gam, books

Why would I change him?

Years ago I received a Christmas card from a friend who had a son with Down syndrome. In that card she wrote, “If there was a cure for Down syndrome we’d pour it down the drain.” Pretty amazing considering when this friend’s...

Published Wed, Sep 19 2012 7:30 PM by Praying For Parker

Filed under: down syndrome, Life With Special Needs, Perfect just the way he is

Dear Moms of Kids who use LTV Vents: HELP!

One signs the Zombie Apocalypse has arrived would be something going smoothly in our quest to keep our Brave Hero breathing these days. It must still be a long way away if my today is any indicator. You’ll remember, Parker finally has his sleep...

Published Wed, Jun 13 2012 2:58 PM by Praying For Parker

Filed under: Advocacy, LTV vent and heater carts

Fine Motor Skills: Teaching Boundaries

I continue the quest of perfecting Parker’s fine motor skills. Strengthening his fingers so that holding a pencil isn’t as hard of a task for him. Perfecting his grasp so that coloring and painting are more enjoyable. There’s a long...

Published Mon, Nov 09 2015 7:46 AM by Praying For Parker

Filed under: Special Needs Homeschooling, Life With Special Needs, sensory activities, SN Homeschooling, teaching fine motor skills, pre-writing skills

How to freeze avocados for blenderized diets.

Last week our local Sprouts had a sale on avocados for .49 cents each. Seeing as I had just paid over a dollar for the avocados I had just purchased for Parker’s blenderized diet, I was beyond thrilled. I found myself wishing that I could somehow...

Published Tue, Jun 03 2014 9:40 AM by Praying For Parker

Filed under: blenderized diet, homemade formula, blenderized diets, g-tube, freezing avocados, food saver, parenting kids iwth special needs

Homeschooling a child with Down syndrome.

Every 4 months or so I block out a couple of days for planning Parker’s home school curriculum. You’d think that in that much time I’d be able to knock out the entire year. Nope. No such luck. It takes time to translate Parker’s...

Published Mon, Oct 07 2013 9:58 AM by Praying For Parker

Filed under: Special Needs Homeschooling, Special Needs, homeschooling, Life With Special Needs, special needs parenting

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