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Blogs by Connie Faust
Aaron and me
1/27/2012 1:58:00 PM
Update my blog? Well, fancy that! I'll write about our Aaron! What a guy!
Aaron is on the computer phone right now. He's 16 now, and knowledgeable about all things computer. I am not.
Aaron thinks I need to keep my blog more up to date, so I get more traffic.
Aaron is so cool! When he was born, he weighed just under 2 lbs. Now he's a nice, chunky boy.
It seemed like we held our breath for months, waiting to see how Aaron would grow and develop.
At first, it was all touch and go. Would he be able to hear? Would he have sight? (His eyes weren't open yet, but were still sealed tight) So tiny, this little bit of humanity. So fragile, we weren't allowed to hold him for awhile.
Strange, but true, his first time to pee was exciting! It worked--yay! And so it went.
Surgeries were common from the beginning, but nonetheless frightening. Pace the hospital corridors, slouch for a while in the waiting room.....pray, pray, pray.
Our boy struggles with walking, but he's a trouper. What a privilege to know Aaron!
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He just sent me a short chronicle written by his mom, my daughter Carol:
14 yrs ago on Novemeber 27th, Aaron was born. He was 3 1/2 months early.
He weighed 899 grams and was 12 inches long.
His lungs were so premature that his first breath shattered them, they weren't ready for oxygen.
His chance of survival was so low that they couldn't give us a number.
He was so small that my size six ring fit over his hand and up to his shoulder.
He was on a ventilator for months, had an arterial feeding line, oxygen..
He suffered level 3 brain damage on one side and level 4 with seepage around the brain on the other side.
His first surgery was on his second day of life and he has had a dozen since then.
He was so premature and fragile that we couldn't hold him for nearly a month. On christmas his Dr's gift to us was to allow us to hold him for just a few moments and then it was back to weeks of not holding him.
He spent 3 months in ICU and then he came home for a few days, and then back in because he stopped breathing.
Over the next few years he had many surgeries, on his eyes, stomach, to repair hernias.
And he had bout after bout of pnemonia, each one meaning weeks in the hospital. I actually felt more at home at the hospital then in my own home.
And then came the drop seizures. Hundreds per day. It was like a big hand coming from the sky and smashing him face first into the floor. He had scans done and they said by the time he was 7 or 8 he would have several kinds of seizures as well as his drop seizures.
He was so doped up but nothing stopped them from coming.He spent a few years dealing with them and then one night he got a high fever.. and that was the last night he had a seizure. Dr's don't know why they stopped, eventually he was weaned off of the meds and they never came back.
They told us he would never walk, never talk, never eat on his own even. He would in essence, be a vegetable (tho they didn't use that word).
For the first seven years, Aaron struggled to live .. I can't even begin to remember all the times that we thought this was the end, his last illness, his last surgery, his last day with us...
His last bout with pnemonia, he was seven years old. It was so bad.. I remember the very moment they told us maybe his family and friends should come say their goodbyes.
Everyone came, even my older son's teacher came and sat with us. His favorite Dr came, though he was no longer Aaron's Dr. He brought in this huge bigbird that Aaron had loved.
And then, out of the blue, Aaron turned the corner and he came back to us. So tiny and frail, but determined to live.
And that was his last fight with pnemonia. He never had it again, much to everyone's surprise.
I can't even begin to tell you all of Aaron's story, it would take a novel and more.
He struggled to learn to eat (that took years and he had a tube in his tummy back then), he struggle to talk and learned to sign first, he struggled to walk and didn't walk unassisted until he was 5 or 6...
but through it all.. even in his darkest hours, he shines.
People have told us over and over again that he has touched them, even people he's met for a just a few moments have told us they feel blessed to have met him. In him, they find hope ... and laughter..
They tell us he is a joy and a precious little soul ..
Today Aaron is nearly 14 yrs old. He has cerebral palsy, aspergers, mental delays. He still struggles with certain illnesses and often is on antibiotics, breathing treatments, and steroids..
He now uses a wheelchair for any distance over 1/4 of a mile.
But he has overcome so much, so many things they said were never possible..
He walks short distances, he talks ( too much! lol), he plays and laughs and goes to school..
He has an amazing sense of humor and so much compassion and love..
He is a true miracle.. my miracle..
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• My Little Sugar - Thursday, February 09, 2012
• One Sick Little Doggie - Saturday, January 28, 2012
• Aaron and me - Friday, January 27, 2012
• Too precious--MUST SHARE! - Monday, July 18, 2011
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• Beautiful word--Stable - Wednesday, July 07, 2010
• July update on Esa - Wednesday, June 30, 2010
• Esa Has A Problem - Tuesday, June 22, 2010
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• Peter Cottontail's always busy! - Saturday, April 10, 2010
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• An Update on Esa - Wednesday, December 30, 2009
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