April 2012 - Praying for Parker - The Network of Care

The Works of God and My Kid with Special Needs

Mormons reading this will know what I am talking about when I say this weekend was the LDS General Conference. Twice a year the entire Church gathers via the web, television, radio, and in person to hear timely words of hope and inspiration. During the...

Published Sun, Apr 01 2012 7:12 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, Advocacy, down syndrome, Life With Special Needs, lds general conference

Upper GIs, FEES studies, and keeping our Hero safe.

I have a sick kid today. A really sick kid. I’m hoping I can keep his lungs safe enough to keep him out of the hospital the next few days. We took Parker in on Wednesday for an Upper GI. I worry about his Nissen when he throws up over it as easily...

Published Fri, Apr 06 2012 12:07 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, The HIGH Cost of Health Care, Advocacy, aspiration pnuemonia, sleep safe bed

Ignorance: It begins in the medical manuals.

90% of all prenatally diagnosed unborn children with Down syndrome are aborted. NINETY percent. That leaves only 10 percent given the opportunity to take their first breaths. Perhaps it has to do with the way the diagnosis is delivered. Misinformation...

Published Mon, Apr 09 2012 9:44 AM by Praying For Parker

Filed under: Advocacy, down syndrome, Special Needs, Life With Special Needs, T21

Nobody Ever Said It Would Be Easy

When Parker was born nobody told me that raising a medically fragile child with Down syndrome would be easy. I could spend my time complaining and bemoaning and all kinds of weeping. Instead I’ve chosen to empower myself by taking the best care...

Published Thu, Apr 12 2012 9:12 AM by Praying For Parker

Filed under: Holding On Tight To My Faith, Advocacy, Life With Special Needs, Family and Friends, yard sale 2012, Happiness and Down syndrome, Why I Blog, Beauty in the face of Down syndrome

Our Sleep Safe Bed Insurance Appeal: Help Needed!

We recently sent in a request to both our private insurance and Medicaid for a sleep safe bed for Parker. Parker’s crib is no longer safe for him. Most importantly is Parker’s severe risk of aspiration that put him in the hospital for a week...

Published Thu, Apr 12 2012 1:31 PM by Praying For Parker

Filed under: Advocacy, Hospital Frequent Flyer, Insurance appeals, Sleep Safer High Bed, Medicaid appeals

Behaviors of the concerning sort.

We’ve noticed some behaviors our Brave Hero is sporting lately that are a bit concerning. Little things, that are at the same time big things. Like Parker’s car seat. Parker LOVES to go for rides in the car. I used to feel guilty seeing how...

Published Thu, Apr 12 2012 7:56 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, Advocacy, medically fragile children, Insurance appeals, Medicaid appeals, sleep safe beds, Mama guilt

Learning When Enough is Enough

You can learn a lot from planning a yard sale. As I’ve been going through all of my ‘stuff’ and my kids have been going through all of their ‘stuff’ we keep making the same comment over and over and over again: “How...

Published Sun, Apr 15 2012 7:12 PM by Praying For Parker

Filed under: frugal living, selective materialism

So, is it still a sin to covet a…..

Our ‘extra’ oxygen concentrator died today. Well, at least we received word of it’s death. There is a ‘possibility’ of it’s resuscitation, but no guarantee comes with the $800 bucks they want to attempt to breathe life...

Published Tue, Apr 17 2012 8:42 PM by Praying For Parker

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

Proof Positive

Parker’s need for a Sleep Safer Bed includes a lot of reasons from his severe aspiration risk to the fact that he easily get entangled in his bolus feeds tubing to the fact that he is a HUGE fall risk climbing out of his crib and a strangulation...

Published Wed, Apr 18 2012 11:48 AM by Praying For Parker

Filed under: The HIGH Cost of Health Care, sleep safer bed appeal

Those smiles. They’re back.

Maybe it’s because the antibiotic if finally kicking in. (We have TWO more rounds to go!) Maybe it’s because our most favorite nurse is back with us full time. (It looks as though our THIRD nursing company change has been the charm. Seriously...

Published Thu, Apr 19 2012 9:40 AM by Praying For Parker

Filed under: Life With Special Needs, smiles, answer to prayers

Where I come clean and get my act together.

True confession time. Hopefully confessing will be the final nudge I need to get my act back together. I hate dinner. Seriously. Hate. It. Okay. Maybe I just hate it when I’m so tired I can barely see straight and I still have dinner to make……and...

Published Thu, Apr 19 2012 7:18 PM by Praying For Parker

Filed under: From Scratch, frugal living, Life With Special Needs, cooking from scratch, menu planning

The Great Depression, My Grandparents and Me.

My dad grew up in an orphanage. His dad died when he was young, leaving his mother to raise a family of 4 kids by the money she earned cleaning homes. Because she was gone so often working, leaving the oldest to tend the younger, a neighbor called the...

Published Sat, Apr 21 2012 8:25 AM by Praying For Parker

Filed under: From Scratch, frugal living, DIY, Victory Garden, victory gardens, the great deprssion

The little bits of happiness and a beautiful life with Down syndrome.

The last time we took Parker to the dentist he was still so small that the dentist held Parker’s head in his lap and Reed held Parker’s feet in his lap. Me? I prayed like hell this would hurry quick and be over. Yesterday we took Parker to...

Published Tue, Apr 24 2012 8:14 AM by Praying For Parker

Filed under: down syndrome, Life With Special Needs, Family and Friends, joy in the journey

But will we still be smiling after tomorrow’s echo?

Thursday morning will find Parker with EKG probes on his chest and covered in ECHO goo. Yup, it’s time to visit the cardiologist again. Words can’t describe how much I hate these appointments. If it were possible to send Reed while I stayed...

Published Wed, Apr 25 2012 7:04 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, pulmonary hypertension, cardiology appointment, HOPEe, down syndrom

April 2012 - Praying for Parker

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