Friday, October 9, 2015

Some days you gotta dance...

Yes, I am titling today's blog after a Dixie Chicks song.  It's stuck in my head today - particularly the line "live it up when you get the chance, when the world's not making no sense and your feeling just a little to tense".... And now, if you know the song, it's probably stuck in your head too.  Sorry about that!

I have created a Facebook Group called Bless Jake's Heart in an attempt to keep those who pray for Jake updated on a more regular basis, as the normality of our lives these days doesn't give me a whole lot to write about --- and I thank God for that every single day!!!! Please feel free to join it, and keep up with Jake's busy life these days.  We have a lovely Fall routine in place, that involves a freedom Jake has never had before.  Jake is in swimming lessons, a weekly playgroup, and KinderMusik, and every dry day we are at the playground across the road where Jake can easily spend an hour sitting in the swing, he loves it so much.  

Those of you who have been following Jake for awhile know that he is due for his third stage repair, the Fontan Procedure,  right about now.  Jake's cardiologist and SickKids have both expressed the opinion that it would be better for Jake to be bigger before this procedure takes place.  The open heart surgery has been delayed, likely until March or April, to allow time Jake to grow.  That is only if his heart function remains the same, and we keep getting those great "no change" reports at his Echos.  So we're entering Flu season and hoping for the best.  One day at a time, and knowing God is bigger than they bogeyman, as the Veggie Tales would say.

In the weight department we have good news to report! Jake weighed in at a whopping 26 lbs 8 oz at his last weigh in!!! Whoo!!! We danced that day too.  Now we're aiming for 27 lbs...hopefully this month.  The intense feeding schedule we have him on seems to be effective in putting on those calories.  Of course his eating/drinking has dwindled down to almost nothing because he no longer feels hunger but he is still snacking enough to retain his eating skills, which is really all we need at this point.  Jake does feel thirst though, because of the concentrated formula he is on, and will also drink a little each day.

Georgia is on my mind today.  It's tough being the healthy sibling sometimes.  Our life is in a lovely level of calm right now, but I know in a few months it won't be.  Please keep Georgia in your prayers too.  

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