March 2010 - Praying for Parker - The Network of Care

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

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

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

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

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

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

March 2010 - Praying for Parker

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