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Saturday, September 14, 2013

Please Heal My Child…

I sit, praying, hoping, loving, watching…How can this disease steel so much from my child.  I find myself looking for signs of improvement…only to find that he still has signs throughout his skin and his actions.  Parker is currently in adrenal failure…barely traces of cortisol in his blood.  I watch him sleep, for his stomach to rise up and down as the bi-pap machine pressing air in and out of his lungs.  Sometimes the movement is so subtle that I feel I have to lay my hand on him…just to check, as I hold my own breath until I feel the soft rise and fall.

I look at his hand and feet…full of swelling with a mixture of red, purple, blue, grey, and white.  His vessels thick and at the surface, as if they will bust out of his skin.  Tiny bruises trickle across his neck and shoulder.  His face…beat red in one moment and pale grey in the next. 

He doesn’t really want to talk…he just wants to be left alone…to sleep and distract himself with videos.  As his Hizentra infusion flows in him, I pray that it boosts him enough to heal.
Lily (our dog) is right by his side…she knows….dogs always know.

Why does this disease try to overcome our child…he is incredibly strong, completely determined to ride through this…always hoping that JA will stop hurting. 
Today he is really dizzy.  He is still having sweats and chills.  

The emotion is in the silence… with love in my heart, please heal my child.
 

6 comments:

  1. Praying for your sweet brave boy. Sending healing thoughts and prayers your way <3

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    1. Thank you so much Christine. Our children are our heart...always praying for you and Nick. Much love.

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  2. I am so sorry that this has been so hard for your family. Reading this is simply heartbreaking. We continue to pray for your whole family daily, usually multiple times. We are so blessed that Em is responding so quickly. I pray that Parker starts to feel better very quickly, and that the meds kick in enough to give him decent relief. Much love and many hugs to you!

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    1. Danielle, I am so glad that Em is responding to her meds. Thanks for your love, prayers and kind words.

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  3. All the stories of autoimmune arthritis affect me in some way; this one has really tugged on my heart, as it has through our entire IFAA volunteers and staff, as many 'met' Parker through his live chat in May. No matter how many flares I personally experience, when people ask me 'how do I run a global nonprofit with autoimmune arthritis?' THIS is how. I will never stop as long as there are Parker's out there. Research, education, advocacy, awareness...it all needs to happen. My sincerest well wishes to you and the Lentini family. We'll be following his progress.

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    1. We are so fortunate to have people like you advocating for all of us and our children. Until there is a cure....we must all speak up. Thank you so much Tiffany.

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