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Melody

  • A mom by birth and adoption shares - through photography, writing and humor - parenting boys who live with autism, ADHD, cerebral palsy, fetal alcohol spectrum disorder and more. Reminding everyone that children with special needs are kids.

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  • My special purpose sons take me to places daily in mind and heart that I would have never known existed without them. In sharing photos and a few words from our daily life, I encourage you to look at your life with humor, hope and the reality that you do what you can do when you can do it.

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« A Harry Potter And The Deathly Hallows Giveaway | Main | Aaahhhhhh ~ Wordless Wednesday »

July 23, 2007

Above All ~ Pray For Parker

Love_for_parker

Tears stream down my flushed cheeks while typing this post.  So many have emailed me asking for updates as to how the donations are going for Love For Parker...there will be many updates throughout the week.  I thank each of you for your spirit of love in giving.   But this is far more important...

Tammy, Parker's mom, has just emailed me about Parker's echo cardiogram today and...it is not a good report.  I am almost at a loss for words through my tears, so I asked Tammy's permission to copy her words from our email and post them here.  She said "yes".  She also said "But please, Melody, ask for prayers for Parker.  Please, above all, prayers for Parker."  And so that's what I ask of each of you...Prayers for Parker.

Here's today's reports from Parker's appointment...in the words of a mom whose heart is so heavy...

We received bad news.  His pressures have gone from 54 to 81. 

The cardiologist is talking to the ENT, Sleep Specialist, and GI doctor.

He will be going in for another PH probe. 

He will most likely be getting the trach.  (tracheotomy)

The cardiologist doesn't feel it is because of his lungs or his medication no longer working.  He feels something has 'come up' and we need to figure out what.  Parker has severe upper airway issues and that could be the cause of his PH.  He says that for Parker to have been at near NORMAL levels so quickly on the Tracleer he believes that we can reverse these pressures again...IF we can find the missing part of the puzzle.

Parker's crit was down to 20.

He needs to be transfused.   BIG TIME.

I'm sure we'll be hanging out on one of the floors at PCMC pretty soon.

My heart hurts.

PLEASE pray for the cardiologist to be tuned into the Spirit while he speaks with the ENT and Pulmonologist and that together they can discern what is the best path to follow and decision to make for Parker's health.   And please pray for answers as to the best way to treat the chronic sinus infections and thick mucus that is stuck in his nasal area. 

I am so confused.  His BNP on Thursday was 122.  Not great, but WAY better than 1600........and now his PH values are so high. 

We REALLY need prayers.

~~Tammy

I have talked with Tammy enough to understand one thing...many complications which arise with Parker are preventable and correctable.  A huge problem arises when there is not excellent coordination of care between Parker's many specialists.  The lack of excellent coordination of Parker's care arises from the simple fact that their insurance company leaves so many medical needs uncovered.  When you have to see whatever doctor the insurance company dictates, or are told to try this medication before the more effective one simply because it is cheaper...do you begin to see the big picture?  I can vouch because I've lived much of this with my children.

So you see, this love offering...Love For Parker...is very needed.  For the simple fact is this...with the money a better coordination of care for Parker will happen.

But now...at this moment...if you pray...stop...and honor the request of a mother...PRAY FOR PARKER.

Parkeranimated

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