Tuesday, October 9, 2012

Dealing With Uncertainty...

Brian has been home from school the past two days - he has a cough and the sniffles.  It's hard to say if it's a cold or allergies but either way it was a great excuse to stay home and hang out with his favorite Mommy!  Each day we watched Gavin and Miss Sara head to school on the bus...
...and then we'd get down to business.  We conquered important projects like Pirate Ship steering, fort building, train track management and fending off dinosaurs.  Although, judging from what snuck into my back pocket - unnoticed until the next morning - I'm not so good at the "fending off" part.
On Monday, when we pulled into Gavin's school parking lot, we were surprised by two huge fire trucks!  The whole school was treated to a presentation about fire safety.  Gavin learned all about the trucks and equipment - and even got to climb in and explore the inside!  
He even got a shiny new fire hat from the nice fire man.
Gavin is still doing so well in school - and loving his new therapy team.  Sara tells me he really enjoys working with paint - loving when it gets all over his hands!  The boys often bring art projects home from school.  I have memory boxes for each of them (Gavin's is nearly full!) and save some of the art projects - but it's really impossible to continue to save all of them.

I recently discovered the most adorable app to help me with my dilemma!  It's called ArtKive - a place where you can safely "archive" your kids art!  When I got it, it was free.  I have no idea if it's still free - but I highly recommend it either way!  Whenever the boys come home with some artwork - like when Gavin came home with his apple tree...
...or Brian came home with handprints and extra love for his Daddy...
...I take a picture of it with my phone.  Each of them have their own file of artwork and as it comes in it automatically gets shared with Ed.  Ed gets it in his email and is prepared to gush over their masterpieces when he walks in the door from work.  Seeing the boys faces light up with pride is the best feeling ever.

Last Friday the boys had a dentist appointment and, thank God, had good check ups.  I don't ever want to project my dental phobias onto the boys.  So far they have NO fear and get lots of compliments from the dentists on their behavior.  And I get compliments on their hygiene.  Whew.
 They give the dumbest, cheapest toys after their dentist appointments...but Brian, especially, treats them like gold bars.  I'm thinking of shopping at the dentist for Christmas.  They are on to something.
 This Thursday I'll be taking Gavin out of school again to head to DuPont.  We'll be meeting with his genetic team and getting some blood drawn for testing.  We've been dealing with some uncertainty since Gavin's genetic testing came back and it's a little stressful.  If you could send lots of positive thoughts his way and ours, we'd appreciate it.  I apologize for being cryptic, but it's not worth stressing multitudes of people if it turns out they are wrong.  We'll just have to wait and see.

They say when you're dealing with uncertainty - you should focus on things you can control.  So I choose to control my attitude and keep it positive.  And I keep focused on Gavin who continues to amaze and inspire...
Thank you for loving my family.


  1. OMG! Gavin is walking SO well! Pretty soon you won't be able to keep up with him:) I bet Gavin thought the fire truck was cool. He's a boy, and what little boy doesn't love fire trucks, right? And thanks for reminding me that I have to visit the dentist next week. Eek! I'm going to start running now.

    But before I run away from the dentist, I wanted to tell you this. No matter what Gavin is diagnosed with, you will likely have the "Gavin is probably never going to do [insert list of things here]" conversation. Write these things down and title the list "Things Gavin IS Going to Do". And do everything you can to help him achieve those things. As he does them, put a sticker, a checkmark, a smiley or whatever next to it. Keep the list somewhere close. If you're having a bit of a bad day, look at that list and look at how many things Gavin has done that he shouldn't have been able to. And remember, Gavin is a superhero. He can do ANYTHING. And you are the mom of a superhero, meaning you can do anything as well. And also remember that a diagnosis is nothing more than a label and an explanation.

  2. You could write suspense novels! We have exome sequencing pending for us so I'm always stalking the results of those who have already done it. We were told to wait b4 testing because of some "interpretation issues". I hope those issues are all you are dealing with and that nothing but good comes from the test. Knowledge is power so anything gleaned from it will hopefully help. Thanks always for sharing your sweet boys and your experiences


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