March 2010 - Praying for Parker - The Network of Care

CBC Results

We got the call we’ve been waiting (and waiting and waiting and waiting) for. The results? Well, let’s just say that the words “beautiful” and “perfect” were used to describe our Brave Hero’s blood work. Uh. ‘Scuse...

Published Wed, Mar 24 2010 5:38 PM by Praying For Parker

Filed under: Fantabulous-ness, down syndrome, rsv, pneumonia, leukemia, CBC

The Language of Support: Special Needs Style

Support is such an important thing in the life of a family parenting a child with special needs. Many of us find ourselves feeling very alone and wondering if anyone else out there feels the way they do. You very quickly discover who your true friends...

Published Wed, Mar 03 2010 7:46 PM by Praying For Parker

Filed under: A Day In Our Life, Advocacy, down syndrome, Special Needs, support

The First Swing of Spring

It was almost warm enough to swing last week. In swinging, as in horseshoes, almost is close enough. Is there something your kid loves, an activity that makes their heart sing? And for those of you who may be interested, Parker weighed in at an all time...

Published Tue, Mar 09 2010 8:30 PM by Praying For Parker

Filed under: A Day In Our Life, Fantabulous-ness, Special Needs, homeschool, swing, spring

Please PRAY

Reed and our nurse just took Parker to American Fork ER. The idea is to get him stabilized and then most likely life flight him up to Primary Children’s Hospital. Parker really took a turn for the worse early this morning. You can hear his lungs...

Published Thu, Mar 18 2010 8:24 AM by Praying For Parker

Filed under: Uncategorized

Tender Mercies

Update: THANK YOU for the love and prayers. I talked with Reed about an hour ago. They’ve got Parker up on the trach pod at Primary Children’s Hospital. Parker’s needing his vent 24/7 in order to keep his sats at a decent level. The...

Published Thu, Mar 18 2010 8:26 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, Frequent Flyin At The PCMC, The HIGH Cost of Health Care, down syndrome, Special Needs, Primary Childrens Hospital, medically fragile children, rsv

A Turn for the Worse

I just spoke with Reed. Parker’s temp has spiked drastically. Parker isn’t able to maintain his oxygen levels even with the support of his vent. I’m pretty sure they will be sending him to the PICU. I’m for any and all to circle...

Published Sat, Mar 20 2010 9:37 AM by Praying For Parker

Filed under: Holding On Tight To My Faith, Frequent Flyin At The PCMC, rsv

The Worth of the Life of One Brave Hero

Today’s x-ray did indeed show signs of pneumonia. So IV antibiotics were started. Several hours later and the Brave Hero has perked up. And he’s still in his room on the trach pod. No PICU. Which are the sweetest words I’ve heard in...

Published Sat, Mar 20 2010 6:10 PM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, The HIGH Cost of Health Care, Advocacy, down syndrome, I'm The Mama: Hear Me Roar!, rsv, medicaid in Utah, snagis

We made it through the night……

barely. Up at Primary’s they had Parker on an oxygen mixer with about 70% oxygen. At home he’s back to the oxygen concentrator and at about 2:00 a.m. he was up to NINE LITERS. Which, shall we say, is kinda terrifying. The thought of taking...

Published Mon, Mar 22 2010 8:26 AM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, The HIGH Cost of Health Care, A Day In Our Life, Fantabulous-ness, down syndrome, rsv, pnemonia

Masimo SET LNCS Sensors

This is what I’m trying to find at prices less than $400.00 a box of disposables and $250.00 for a long lasting one. *faint* And the battery for this Masimo that we also need runs $375.00. All of this comes out of pocket for us because the unit...

Published Mon, Mar 22 2010 11:48 AM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, The HIGH Cost of Health Care, Masimo SET LNCS Sensors

Not in a Twilight Kind of Way

I went in for some surgery last week. I figured it would take me a few days but that I would be back up and running lickety split. Does anyone even say lickety split anymore? Must be the drugs. Had a couple of things happen that weren’t on the original...

Published Sun, Mar 07 2010 11:41 AM by Praying For Parker

Filed under: A Day In Our Life, surgery, blood transfusion, twilight

I’ll share mine if you’ll share yours…

My natural instincts are to rush, cram, and just get through the dealings of my day. But one thing I’ve learned about being Mom to a medically fragile child with special needs, is that slower is often better. Especially after the week from hell...

Published Thu, Mar 25 2010 9:33 PM by Praying For Parker

Filed under: A Day In Our Life, Fantabulous-ness, Special Needs, simple living

Sometimes I’m Afraid

If you were to ask me whether or not Parker has made my marriage stronger or more stressful, I’d have to hesitate before I answered you. Not because I don’t know the answer, but because I’m not sure how you would react to it. If I told...

Published Mon, Mar 29 2010 7:28 AM by Praying For Parker

Filed under: A Day In Our Life, down syndrome, Special Needs, I'm The Mama: Hear Me Roar!, acceptance, trust

Here we go……again.

I’ve got a huge pot of millet on the stove. I’m making it to use in Parker’s blenderized diet. Millet has an 11% protein content and is GLUTEN FREE. I toasted it before I started it on a boil, and my house smells so good. While the millet...

Published Mon, Mar 15 2010 1:15 PM by Praying For Parker

Filed under: Frequent Flyin At The PCMC, A Day In Our Life, down syndrome, Special Needs, blenderized diets, millet

Children Of Some Other God?

The things that blow me away the most are the stories I hear from families of children with special needs who have dared to take their child to church. Well, at least that is how they wound up feeling about it. Because, their kids, weren’t really...

Published Tue, Mar 16 2010 6:56 PM by Praying For Parker

Filed under: A Day In Our Life, down syndrome, Special Needs, I'm The Mama: Hear Me Roar!, religion, church

Thank You

Reed called me a few hours ago and said that the docs up at Primary’s thought Parker could go ahead and come home. So Rigel and I drove up to PCMC and brought them home. Home. Parker is still one very sick kid. But now he is healthy enough to be...

Published Sun, Mar 21 2010 5:43 PM by Praying For Parker

Filed under: Fantabulous-ness, down syndrome, rsv, pneumonia

March 2010 - Praying for Parker

Syndication

Recent Posts

Tags

Archives