Praying for Parker

Thirty-six and a Half

Those of us who have kids with special needs tend to celebrate milestones a little differently than our peers raising only typical kids. I’ll never forget when Parker started walking. He was 3.5 years old. We were still celebrating months later...

Published Wed, Jul 27 2011 5:14 PM by Praying For Parker

Filed under: A Day In Our Life, Fantabulous-ness, down syndrome, blenderized diets, right heart cath

I’ll show you ours if you show me yours….

Parker and I are over at our other gig, The Homeschool Post. We are showing you ours. And we hope you’ll show us yours. Read More...

Published Mon, Aug 01 2011 7:06 AM by Praying For Parker

Filed under: Special Needs Homeschooling, homeschool, homeschooling a kid with special needs

A date. A time. A right heart cath.

The date is set. The time confirmed. Friday Parker’s cardiologist and the anesthesiologist of our choice will carry our Brave Hero back into the lab for Parker’s 4th right heart cath. There are good things about this. The fist thing being...

Published Tue, Aug 02 2011 11:01 AM by Praying For Parker

Filed under: A Day In Our Life, pulmonary hypertension, right heart cath, power of prayer, Prayer. We need lots of it.

A video of Parker’s heart rate ‘cycling’.

I’ve written before about how strange Parker’s heart rate can be……and what an indicator it is of an upcoming illness or aspiration issue. Last night Parker sleeping heart rate was beee-u-tiful. Today his napping heart rate is ‘cycling’...

Published Tue, Aug 02 2011 3:43 PM by Praying For Parker

Filed under: Prayer. We need lots of it.

Make Your Own Sensory Table On The CHEAP!

It started with a post on Ikea Hackers. After picking up my jaw over the prices of standing sensory tables I went on a hunt for a DIY version of a sensory table. Okay. So this one isn’t as grand as the ones with the $200.00 price tags. But when...

Published Thu, Aug 04 2011 12:43 PM by Praying For Parker

Filed under: Special Needs Homeschooling, sensory tables, ikea, make your own sensory table

Faith and a Right Heart Cath

For me, faith is a work in progress. There are some areas of faith that I am exceptionally strong in. These may be the same areas that others struggle in. I often read of Moms, who having reached a certain point, turn the matter over to God, in full faith...

Published Thu, Aug 04 2011 10:43 PM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, A Day In Our Life, down syndrome, pulmonary hypertension, right heart caths, faith

Sleep and the kid with special needs.

Where’s the Sandman when you really need him? Don’t let this peaceful little face fool you. He woke up this morning at 4:00 a.m…. a total wild man. After only 6 hours of sleep, Parker’s eyeballs popped open and all hell broke loose...

Published Thu, Aug 11 2011 8:18 AM by Praying For Parker

Filed under: A Day In Our Life, down syndrome, Special Needs, weird sleep patterns, sleep, insomnia

Glowing in the Dark

Last night, after talking to Parker’s PCP, she asked me to take him in for another lung x-ray. Ready and waiting for that x-ray. Notice that as usual, Parker has taken off his left shoe only. Totally ignore the fact that he has his oxygen tubing...

Published Wed, Aug 17 2011 2:45 PM by Praying For Parker

Filed under: A Day In Our Life, down syndrome, Special Needs, right heart cath, ear infections, cuffed trachs

Parents.com Best Special Needs Blog Nominee

We’ve been nominated! Yup. Us. The Brave Hero and I. We received a notice yesterday that Parker’s blog was nominated for Best Special Needs Blog on Parents.com. The competition is pretty stiff. Other blogs have been nominated longer, and thus...

Published Wed, Aug 17 2011 6:49 PM by Praying For Parker

Filed under: A Day In Our Life, Fantabulous-ness, parents.com, Parents magazine

Increased Oxygen Needs and Cuffed Trachs: Help Needed

The night before Parker’s right heart cath his oxygen needs increased. Actually, they doubled. And we’ve been having issues ever since. During the cath we discovered that Parker has an air leak around his trach. The anesthesiologist felt that...

Published Sat, Aug 20 2011 9:26 PM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, A Day In Our Life, down symdrome, cuffed trachs, increased oxygen needs

Friends and the Kid with Special Needs

My heart broke a little bit. We often have a little neighborhood boy come to our house. Usually he comes to swing on the swing set. But as Parker’s health has improved we’ve invited him to come in and play. At first all was well. But as time...

Published Mon, Aug 29 2011 8:21 AM by Praying For Parker

Filed under: A Day In Our Life

Phyical Therapy: Bounce House Style

It’s been a summer full of sinus infections, right heart caths, and allergies. But the cath is over, the antibiotics have kicked in, and it’s time to have a bit of fun before the summer is all but over. But where does one go when it’s...

Published Tue, Aug 30 2011 9:15 AM by Praying For Parker

Filed under: A Day In Our Life, Fantabulous-ness, physical therapy, Bounce House

Physical Therapy: Bounce House Style

It’s been a summer full of sinus infections, right heart caths, and allergies. But the cath is over, the antibiotics have kicked in, and it’s time to have a bit of fun before the summer is all but over. But where does one go when it’s...

Published Tue, Aug 30 2011 9:15 AM by Praying For Parker

Filed under: A Day In Our Life, Fantabulous-ness, physical therapy, Bounce House

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.

Foiled Again!

We’ve been rocking the cuffed trach for a few weeks now. I’m feeling much more confident that I won’t expand this sucker to a width that harms Parker’s trachea. Someone put that thought into my head and getting it out took something...

Published Fri, Sep 09 2011 3:49 PM by Praying For Parker

Filed under: A Day In Our Life, down syndrome, Special Needs, cuffed trachs

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