Praying for Parker

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

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

Baptism/Communion and the child with Special Needs

In the LDS culture children are baptized at the age of 8. When Mormons baptize someone, it’s by full immersion. If even your hair rises to the top, they dunk you again. I was baptized in the Mediterranean Sea while my family was living in Turkey...

Published Wed, Feb 01 2012 5:59 PM by Praying For Parker

Filed under: Advocacy, Life With Special Needs, baptism, religious rites, Holy communion

There’s No Such Thing as a Defective Child

It came across my Facebook stream. The sadness. The hurt. The unbelievable-ness of it all. An almost Mother. A pre-natal diagnosis. The decision to abort already made. Because this child, the same child that yesterday held hopes and dreams and...

Published Sun, Dec 18 2011 4:17 PM by Praying For Parker

Filed under: Advocacy, choose life

In Theory: ‘Adult’ medications and medically fragile kids.

Up to Primary’s we went today. Again. We met with the ENT and talked about our experiment to see if Parker’s reflux issues have come back. There was no blue in his trach nose, so it’s looking as though that isn’t...

Published Thu, Sep 20 2012 7:13 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, down syndrome, botox, Frequent Flyin' ar the PCMC, epiglottal fold over

On Egos, Surgeons, and those trying to keep a kid alive.

Dear Surgeon, I brought Parker in to you on Thursday over concerns that he can so easily throw up over his Nissen. No gagging needed. Because of this I have had worries that Parker could also be refluxing over his Nissen. During our last appointment with...

Published Fri, Jun 01 2012 8:47 AM by Praying For Parker

Filed under: Advocacy, Nissen, reflux, aspiration, Life With Special Needs, Frequent Flyin' ar the PCMC

Thirty-eight and a HALF……

Okay, I know the steroids have a lot to do with this, but we are happy dancing over here anyway. A certain Brave Hero has reached the grand weight of thirty-eight and a HALF pounds. He’s grown himself the sweetest little Budda Belly...

Published Wed, Jul 25 2012 10:11 AM by Praying For Parker

Filed under: Life With Special Needs, Family and Friends, getting chubby

September’s Sensory Table

There’s a lot of learning that can go on in a sensory tub. Unfortunately, many teachers see sensory tubs as only a preschool/kindergarten activity. You many remember my post on making your own Sensory Tubs on the Cheap. Sensory tables don’t...

Published Thu, Sep 22 2011 8:42 AM by Praying For Parker

Filed under: Special Needs Homeschooling, special needs homeschooling, sensory tables, Sensory Tubs

I tried. I really, really tried.

(The new blog design is coming along. Refresh your page if you can’t see it yet. I still need to learn a few things….like how to add pictures to the rotating part at the top, but we’re getting there.) This week I took Parker to the adaptive...

Published Wed, Sep 07 2011 6:30 PM by Praying For Parker

Filed under: A Day In Our Life, down syndrome, Special Needs, adaptive P.E.

Where the big Happy Birthday post SHOULD be….

Parker hardly ever spikes a fever. But he sure did last night. 102 before the Moltrin finally kicked in….which was right about the time we had to crank his oxygen concentrator up to 6 liters per hours. That’s 3 times more than usual. ...

Published Sat, Nov 19 2011 7:26 PM by Praying For Parker

Filed under: Life With Special Needs, Hospital Frequent Flyer, 7th birthday, aspiration pnuemonia

Another one lost…..

I knew when Parker lost his first tooth that there was another one trying to make it’s way out. Yesterday was the day. This time I wore a pair of gloves. MUCH better experience than last time. I still dread the day he starts losing molars though...

Published Mon, Oct 24 2011 7:03 PM by Praying For Parker

Filed under: Life With Special Needs, tooth fairy

Debt and the child with special needs

As a parent of a medically fragile child with special needs, I KNOW there are other special needs parents working to deal with medical debt while trying to keep a child alive. I’m a big believer in sharing ideas, and offering up support to each...

Published Thu, Nov 03 2011 6:02 PM by Praying For Parker

Filed under: The HIGH Cost of Health Care, frugal living, Life With Special Needs, medical debt

Augmentative and Alternative Communication on the iPad

We’re upping our iPad game here at Parker’s house. The goal? To have Parker participate in 200 daily communication invitations via his beloved iPad. Yup. TWO HUNDRED. Yeah, I know. I’m feeling a bit overwhelmed myself. The question...

Published Thu, Nov 17 2011 10:38 AM by Praying For Parker

Filed under: Special Needs Homeschooling, Proloquo2GO, tap to talk, TouchChat, Ipad Apps

‘Cause Parker Loves Books…..we need your help!

I spent many of my growing up years living in countries that had no *gasp* American television. When we lived in Turkey my Dad always had the television on ……he liked the different test patterns we received from Cyprus. Hey, some of us have...

Published Sun, Dec 04 2011 2:29 PM by Praying For Parker

Filed under: Stuff We LOVE!, Family and Friends, Desert Book Christmas Photo contest, literature basked learning

Weight Gain and the Child with Special Needs

Parker was almost up to 37 pounds. So very close. The weight gain happy dancing was in full force. Then he got sick. Pneumonia. Pseudomonas. That damn Adenovirus that came with a 12 days of diarreha and zofran just to keep the meds down. Before we we...

Published Sun, Dec 11 2011 6:02 PM by Praying For Parker

Filed under: blenderized diet, Life With Special Needs, Frequent Flyin' ar the PCMC, weight loss

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