Praying for Parker

It’s because I know what COULD happen…

that tends to make me a little freaked when Parker gets sick. As a new parent of a medically fragile child with special needs I was familiar with typical childhood stuff. Chicken pox. Colds. A broken arm and two rounds of stitches. But then Parker...

Published Sun, Sep 25 2011 7:32 PM by Praying For Parker

Filed under: down syndrome, Life With Special Needs, Frequent Flyin' ar the PCMC, medically fragile kids, speical needs

How to bring the world to your kid, when your kid can’t go into the world.

Being medically fragile is what led me to home school Parker. What sealed the deal was to discover what our local public school system had to offer a typical kid with Down syndrome as far as an actual education goes. Utah isn’t known for it’s...

Published Mon, Dec 20 2010 11:43 AM by Praying For Parker

Filed under: A Day In Our Life, Special Needs Homeschooling

It’s the weight of the world.

Nothing can freak this Mama out more than a totally out of the blue, surprise call from Parker’s cardiologist. I was out when he called. And I had left my cell phone at home when he called that. Awesome. He’s wondering where we are in addressing...

Published Tue, Nov 09 2010 10:15 AM by Praying For Parker

Filed under: Holding On Tight To My Faith, Frequent Flyin At The PCMC, A Day In Our Life, pulmonary hypertension, aspiration, glottal plasty

CBC Results

We got the call we’ve been waiting (and waiting and waiting and waiting) for. The results? Well, let’s just say that the words “beautiful” and “perfect” were used to describe our Brave Hero’s blood work. Uh. ‘Scuse...

Published Wed, Mar 24 2010 5:38 PM by Praying For Parker

Filed under: Fantabulous-ness, down syndrome, rsv, pneumonia, leukemia, CBC

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...

Published Mon, Apr 29 2013 1:12 PM by Praying For Parker

Filed under: down syndrome, pulmonary hypertension, rsv, Life With Special Needs, Frequent Flyin' ar the PCMC, medically fragile kids, special needs parenting, chronic lund disease, virus

The Language of Support: Special Needs Style

Support is such an important thing in the life of a family parenting a child with special needs. Many of us find ourselves feeling very alone and wondering if anyone else out there feels the way they do. You very quickly discover who your true friends...

Published Wed, Mar 03 2010 7:46 PM by Praying For Parker

Filed under: A Day In Our Life, Advocacy, down syndrome, Special Needs, support

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

A Workbox System For Special Needs Homeschooling

I’ve been loving the idea of Sue Patrick’s Workbox System. Well, it’s actually Sue’s system tweeked for Parker’s needs. What I’m going to share with you today is just the tip of the iceberg as to how we incorporate...

Published Thu, Oct 01 2009 6:09 PM by Praying For Parker

Filed under: A Day In Our Life, Special Needs Homeschooling

Time To Lock And Load

This wasn’t the most relaxing of weekends. Lots of worry. Lots of questions. Lots of prayer. Reed already had planned to be out of town Saturday and Sunday.. way before Parker’s cath had been scheduled, so my sweet Mom came to stay overnight...

Published Mon, Sep 28 2009 2:14 PM by Praying For Parker

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

Crayon Rocks: WINNERS!

With the help of random.org, we have our TEN Crayon Rocks Winners! Kim Blondie Chell Annette Anderson Greta Krista Jennifer Nina Christine Carrie Janet Read More...

Published Tue, Oct 12 2010 8:10 AM by Praying For Parker

Filed under: Fantabulous-ness, Stuff We LOVE!, crayon rocks, reviews giveaways

Dealing with Food Inflation

One of my big goals during the holidays is to stock up on all the great grocery deals. Well, at least it was when there were great grocery deals during the holidays. It was disappointing to see that turkeys never really went down to the low prices of...

Published Thu, Jan 09 2014 7:03 PM by Praying For Parker

Filed under: frugal living, thrifting, Life With Special Needs, prepping for hard times, paying off debt, inflation

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

Every hour on the hour and sometimes in between.

This Parker’s daily schedule. Notice the times of his bolus feeds. The times of his medications. How often he takes meds. From about 11:00 a.m. it’s pretty much every hour on the hour……..and sometimes in between....

Published Thu, Sep 06 2012 9:10 AM by Praying For Parker

Filed under: faith, Life With Special Needs

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

Syndication

Recent Posts

Tags

Archives