February 2012 - Praying for Parker

Medical Binders and the kid with special needs.

Our local children’s hospital is also a teaching hospital. We would take Parker in for an appointment and the nurse would have a zillion questions for us to answer about Parker’s history. Then a resident would come in. Same questions. By the...

Published Tue, Feb 28 2012 6:50 PM by Praying For Parker

Filed under: Life With Special Needs, medical binders

Because we all live Illinois.

I’ve told this story before. But Parker’s blog has had a bit of an explosion lately (yea!) and so I’m going to share the condensed version again. Then we’ll get to some facts. Because, no matter where you are from, if you have...

Published Sun, Feb 26 2012 4:35 PM by Praying For Parker

Filed under: Life With Special Needs

A Tale of Futility….. and Portable Oxygen Concentrators

I knew it wasn’t likely. Seeing as I had just yesterday been contacted by a friend with the same exact optimism. She, too, learned the hard way. You know what they say about hope. It springs. Eternal. Unfortunately it makes no promises about actually...

Published Thu, Feb 23 2012 8:36 PM by Praying For Parker

Filed under: The HIGH Cost of Health Care, Life With Special Needs, portable oxygen concentrators, health insurance

Hold the pity. Please.

I love showing off the awesome that is Parker. There are days where I could swear this kid glows with his love of life. The joy he radiates is not just contagious, it engulfs you, sweeping you up in a happiness hard to find in this world.. This is one...

Published Wed, Feb 22 2012 7:28 PM by Praying For Parker

Filed under: Advocacy, down syndrome, World Down Syndrome Day, Life With Special Needs

Weighted Vests: Experiences Wanted

There are days when trying to get Parker to focus and pay attention to the task at hand is a huge experience in futility. I teasingly refer to it as ‘Goofball Mode’ It’s when Parker simply starts…well, acting like a Goofball. Twisting...

Published Tue, Feb 21 2012 7:57 AM by Praying For Parker

Filed under: Life With Special Needs, compression shirts, weighted vests, senory issues

A tree. A rod. A great and spacious buidling.

There is a story I’ve been told since I was little that I read to my kids when they were little. It’s a story about a man’s dream in which he saw a great and spacious building, a path following a river, a mist of darkness, a rod that...

Published Thu, Feb 16 2012 8:46 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, faith

A tree. A rod. A great and spacious building.

There is a story I’ve been told since I was little that I read to my kids when they were little. It’s a story about a man’s dream in which he saw a great and spacious building, a path following a river, a mist of darkness, a rod that...

Published Thu, Feb 16 2012 8:46 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, faith

Communicating with my non-verbal kid.

I’ve changed things up with Parker’s communication invitations lately. They aren’t the the perfectly set up displays I once created. Instead I have a basket of toys that change every few days. They stay the way Parker last left them...

Published Wed, Feb 15 2012 7:22 PM by Praying For Parker

Filed under: Special Needs Homeschooling, down syndrome, Life With Special Needs, Ipad Apps, communication skills

Mega Bloks Fire Patrol Rescue

I’ll admit it, when I was asked to try out some awesome MegaBloks, I was thinking mega…….as in they were ‘mega sized.’ But the Mega Bloks I received were much smaller. Like both Mega Bloks and Parker, good things come in...

Published Wed, Feb 15 2012 1:16 PM by Praying For Parker

Filed under: Stuff We LOVE!, Mega Bloks

Valentine for a Hero

Those that live at my house know that this Cupid isn’t a fan of baking sugar cookies. The rolling. The cutting out. It seems to take all day. So coming home to hot from the oven Valentine Day cookies was recognized as a labor of love. The cookies...

Published Wed, Feb 15 2012 10:22 AM by Praying For Parker

Filed under: From Scratch, Recipes, Life With Special Needs

The State of Illinois and the lives of medically fragile kids with special needs.

We’ve all had the experience of needing to cut our household budgets. We go, line by line, over each dollar spent and where. We put that new pair of shoes off until later. The pair we have now will last a few more months. Who really needs this many...

Published Tue, Feb 14 2012 9:34 AM by Praying For Parker

Filed under: Advocacy, frugal living, medicaid, travis c. waiver, Politics of Special Needs, DSPD

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

Herding Cats….and Giving Thanks

When my kids were little people used to always tell me not to worry, that as they got older things would get easier. They lied. I’ve been trying to get these pictures taken and posted for a few weeks now. I had them once, and then somehow deleted...

Published Sun, Feb 12 2012 4:19 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, Family and Friends, thankfulness

New Sponsor: Hippie’s Bath and Body

Parker and I would like to welcome our new sponsor Hippie’s Bath and Body! Cause Even Hippies Need a Bath Sometimes! Owned by Petra Monaco who’s shop is nestled next in the beautiful James River Region in Central Virginia, each item is handcrafted...

Published Fri, Feb 10 2012 9:53 PM by Praying For Parker

Filed under: Stuff We LOVE!, giveaway

So Can I.

Deep down inside, in a place where the spirit whispers to your heart, I had this knowing that Parker was going to be born with Down syndrome. After his T&A. Taking into account my ‘advanced maternal age’ and the length of Parker’s...

Published Thu, Feb 09 2012 7:31 PM by Praying For Parker

Filed under: down syndrome, Special Needs, blessings, Life With Special Needs