January 2012 - Praying for Parker

What I feed my g-tube enhanced kid.

My g-tube enhanced Brave Hero has done so well on the blenderized diet I prepare for him daily. He lost a significant amount of weight from being sick so many times this season, but we are back up 2 pounds…..two more to go before we are back to...

Published Thu, Jan 26 2012 7:28 PM by Praying For Parker

Filed under: blenderized diet

Snow Painting

It happened. Finally. It snowed. Snow. Finally Not so much as to be a hassle. Not too little to notice. Just enough. Read More...

Published Wed, Jan 25 2012 5:31 PM by Praying For Parker

Filed under: Life With Special Needs

Even if the rest never follows.

Sometimes the once upon a time me sneaks up and reminds the me in the present of goals set and dreams once dreamt. She reminds me that debt and doctors and pulmonary hypertension were never supposed to be part of our future, and that when my kids finally...

Published Tue, Jan 24 2012 8:14 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, down syndrome, family, faith, Life With Special Needs

The Red Thread and My Child with Special Needs

There is a Chinese folklore, which tells about the connection of family members. The Chinese say that there are invisible red threads that connect a newborn child’s spirit to all of the people that will be important in their life. As the child grows...

Published Mon, Jan 23 2012 8:03 PM by Praying For Parker

Filed under: down syndrome, Special Needs, Life With Special Needs, Family and Friends, The Red Thread

Would it kill them to stop doing that? The R-word and it’s derivatives.

Is a lack of consideration the new black of today’s social culture? When I’m really in the mood to raise my blood pressure I’ll find myself reading the comments section of our local Utah newspapers, namely the comments following articles...

Published Mon, Jan 23 2012 7:27 AM by Praying For Parker

Filed under: Advocacy, down syndrome, spread the word to end the word, Life With Special Needs, r-word

Making Medicaid More Transparent: A Question From A Utah Legislator

Notice: if you choose to use my blog as your venue for trolling, your comment will be deleted and your ISP blocked. There is a difference between asking an honest question and making poorly researched accusations. I have spent much time working in behalf...

Published Sun, Jan 22 2012 12:26 PM by Praying For Parker

Filed under: Special Needs, medicaid, travis c. waiver, Life With Special Needs, Politics of Special Needs, transparency

Expectation and the Child with Special Needs

I’ve noticed lately that sometimes adults expect less out of kids with special needs than they do from typical kids. “Oh, that’s okay.” Don’t worry about it. I understand.” Um. No, it’s not. Not only will he pick...

Published Thu, Jan 19 2012 5:52 PM by Praying For Parker

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

Flour-free Playdough Recipe

It took a long time before the Brave Hero would even think about touching playdough. Now, not only does he enjoy playing with it, he’s willing to explore new textures within it. So I made a batch of flour-free playdough, because of it’s reputation...

Published Thu, Jan 19 2012 9:51 AM by Praying For Parker

Filed under: Special Needs Homeschooling, Art Activities, playdough recipes, flour free playdough, cornstarch playdough, play dough

My foot prints on the path.

I’ve always been really transparent on this blog. Sometimes Reed has looked at me and asked, ‘are you sure you want to share that?’ I’ve shared because, well…. 1) For those who might be contemplating ending the life of a...

Published Mon, Jan 16 2012 10:03 PM by Praying For Parker

Filed under: Advocacy, down syndrome, Life With Special Needs, special needs parents

To “Susan”

Yes, I have received all of your comments. I even replied to your comments. I had everything all laid out and in order. Because the funds Parker receives to stay alive are public funds and I have great respect for that. But then I noticed that your email...

Published Mon, Jan 16 2012 11:56 AM by Praying For Parker

Filed under: Advocacy, Life With Special Needs, trolls

When one life is worth less than another…

Imagine you child needed a kidney transplant. You have the donor. You are at one of the best hospitals in the country. You are ready to move on and get this life saving procedure behind you. Except, the doctor doesn’t think your child is smart enough...

Published Sat, Jan 14 2012 11:52 AM by Praying For Parker

Filed under: Special Needs, Life With Special Needs, Ameilia Rivera, CHOP, kidney transplants

Learning how to spell your name…

I should have named him Bill. Not only less letters, but easier to write too. But we’re working on it. Let me show you how. I printed Parker’s name in watercolor chalks. Then Parker took a watercolor brush and ‘painted’ over his...

Published Thu, Jan 12 2012 6:54 PM by Praying For Parker

Filed under: Special Needs Homeschooling, home school, Reading Activities, name spelling activities, name writing activities, sensory activities

Looking for a Nursing Company……Again.

Parker’s nurse called off today. Again. Which in and of it’s self is no big deal, I guess. Nurses get sick. That is why there are on call nurses. Ever heard of ‘em? The rate that it happens at this agency has become a major issue in...

Published Thu, Jan 12 2012 10:57 AM by Praying For Parker

Filed under: Advocacy, medically fragile kids, home nursing

She said yes…..

Save the date: May 5th, 2012 Mt. Timpanogos Temple Two Down. Several more to go. (Bailey and my Mom) Read More...

Published Wed, Jan 11 2012 12:04 PM by Praying For Parker

Filed under: Family and Friends, Brant's engaged

And the sick came back.

Pneumonia. Adenovirus. Aspiration Issues. Finally healthy. Then two week later, sick again. Stomach flu sick. Diaper change sick. Wide open windows sick. Contemplating gas mask sick. Can we keep him hydrated at home sick. Time to...

Published Tue, Jan 10 2012 8:37 PM by Praying For Parker

Filed under: down syndrome, Special Needs, Life With Special Needs, stomach flu