March 2010 - Praying for Parker - The Network of Care

We All Pick Our Own Battles: The R Word

Some people chose to fight for inclusion for their kid with special needs. Me? I’ve chosen to home school Parker. Some aren’t able to keep up with new bills being presented that effect the life of someone they know with special needs. Me?...

Published Wed, Mar 31 2010 1:13 PM by Praying For Parker

Filed under: Advocacy, I'm The Mama: Hear Me Roar!, spread the word to end the word, The R Word

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

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

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

Prayers for a clean CBC and NO Leukemia

Kids born with Down syndrome are also born with a much higher chance of dealing with Leukemia than their typical peers. Parker gets monthly CBCs because of his pulmonary hypertension and the meds he takes to battle it. So a close eye is always kept on...

Published Tue, Mar 23 2010 12:00 PM by Praying For Parker

Filed under: Holding On Tight To My Faith, down syndrome, rsv, leukemia

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

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

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

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

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

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

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

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

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

Life On Hold

Today’s guest post is compliments of Janis from Sneak Peek at Me. You will want to make sure that you add her to your blogroll. Trust me on this one, k? (And in case you are wondering if it still hurts, the answer would be YES! Told you I was a...

Published Thu, Mar 11 2010 8:49 PM by Praying For Parker

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

March 2010 - Praying for Parker

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