1000 Days of Love

Three years ago, when we were first given Aaron’s diagnosis, I told my doctor that I felt sure his live would be measured more in weeks and months than days and hours.  I had no basis for this, other than a feeling.  And so many times it seemed our time was drawing close, but still, he fought on.  And today, March 9^th, 2013, Aaron turns 1000 days.  1000 days and nights.  I didn’t dare to dream it, not in specifics.

 

 

 

 

 

 

Day 1 – June 13, 2010 

Just a few hours old

Aaron is born, tiny and frail.  It’s only in looking back at his pictures that I realize now how fragile he really was.  Struggling to breathe, eat, and even poop.  The basics we don’t even think of were a fight for this little warrior.  And fight he did.

 

 

 

 

 

 

 

 

 

 

 

Our favorite Pirate picture

 

 

 Day 100 – September 21, 2010

Still tiny, he’s been hospitalized a couple of times already.  We’ve even called 911 and been transported by ambulance to Primary’s by now.  Our first time, but it wouldn’t be our last as we would get to know them very well!  He’s outgrown his central apnea by now, but obstructive apnea is setting in.  And we didn’t know it.  Every day is a blessing.

 

 

Day 200 – December 30, 2010

He’s weathered a couple of surgeries by now, g-tube and nissen, followed a couple days later with trach surgery.  He’s also been life-flighted back in when his vent settings aren’t enough to sustain him.  He fought for days, masking the struggle, until finally in the early morning hours the day after Thanksgiving, he just couldn’t fight any longer on his own.  Bless the Lone Peak Fire District paramedics.  They recognized it, intervened, and saved his life.  A priceless gift that we will always remember, and we can never repay.  Now with new vent settings and a new trach, he really takes off.  No longer struggling to breathe, he starts to put on weight and grow bigger every day.

 

 

Day 300 – April 8, 2011

Aaron has gotten really friendly with the staff at Primary Children’s Medical Center.  Thanks to the trach, he now has a new hole in his body to let germs in.  And as they (the germs) try to decide who is top dog, he ends up fighting infection after infection.  BUT thanks to the trach, he has the strength and endurance to fight back, and he does.  In February, he manages to fight off a pseudomonas (yeah, as yucky as the name) pneumonia with only a six day PICU stay.  I found out on discharge that the expectation was weeks, not days, in there.  That was, IF he managed to fight it off.  All in all, he didn’t manage to go three weeks between discharge and his next admit, but this part was coming to an end.

 

 

 

Day 400 – July 17, 2011  

We celebrate his birthday in June!  It’s an awesome time!  And he’s now strong and stable enough to start focusing quality of life surgeries and issues, instead of life saving challenges.  He has surgery to repair his cleft lip (twice!) and gets ready to start casting for his feet which are curved up and out, the opposite of club feet.

 

 

 

 

 

 

 

 

Day 500 – October 25, 2011

We continue working on his feet.  After a series of casts, he has surgery to lengthen his very tight Achilles tendon and keep his talus bone horizontal instead of vertical.  He also lands himself back in the hospital with a cold, yeah, the common cold.  It’s a rough time as he fights back and forth with the effects it has on his lungs.

 

 

 

 

 

 

Day 600 – February 2, 2012 

Due to his illness in October/November, Aaron has once again been grounded for the winter.  Except for doctor’s appointments, he doesn’t go out.  But he’s growing big! In fact, he’s doing so well that he gets put on a diet!  Yeah, my chunky monkey doesn’t have to work nearly has hard to breathe and eat, so he puts his efforts into growing!  Yea!!

 

 

Day 700 – May 13, 2012

He’s almost two years old!  Growing and loving his life, he’s trying to roll over.  We’ve found a new hearing aid that makes his ability to hear almost normal.  It’s so fun to see his reaction to sounds.  He loves going out on walks and to soccer and baseball games.  He is so happy with his life.  Enjoys staying up and playing all night with his nurses or going out on walks. 

 

 

 

 

 

Day 800 – August 21, 2012

Aaron enjoys his first road trip.  We drive to Arizona to see Gramma and Grampa Brown.  While there, he gets to meet cousins he’s never seen and go swimming.  We also meet up with another special boy, Santi who has Trisomy 13 ring, a very similar condition to Trisomy 18. 

 

 

Day 900 – November 29, 2012 

Aaron gets to go to story time now.  He has a lot of fun moving and dancing to the songs.  He continues to love getting out, and even goes trick-or-treating for the first time.  He’s sitting up pretty well with support, and even for a few seconds at a time without support.  He rolls around in his bed and loves to play with his toys.  With his new bed, his big kids love to climb in and play with him, and he’s always game! 

 

 

 

 

 

 

 

Day 1000 – March 9, 2013

What can I say?  He’s our miracle.  Such a blessing we never could have imagined 1000 days ago.  Thank you all for your prayers and support.  He is our inspiration.

Take a few minutes and watch him grow over the last 1000 days.  I think you'll enjoy it.  A special thanks to Kathryn Weaver for her Trisomy logo designs.

Dream no small dreams for they have no power 

to move the hearts of men.

Johann Wolfgang von Goethe