Wednesday, June 4, 2014

We're back!

Florida was amazing.  Georgia was so happy and carefree...and spent 90% of her time in a pool - either at the resort or at Typhoon Lagoon! Check out a couple of pictures from our get away...

We left Jake in the very capable hands of my Mom and Dad, and he was very well cared for.  So well cared for that he managed to gain 4 ounces while we were gone - this is the baby who went 3 months and didn't gain more than an ounce or two...Mom has the touch, clearly. Thanks, Mom and Dad.  Thanks most especially for doing his daily injections - I know that was very hard for you, and probably shaved a few years off your life in the process.  

When we left, we all got on the plane and by the time we landed in Florida I had only cried 3 times - I think that's pretty good all things considered? I managed to relax more by our second day there, and can really, honestly say that I was happy and peaceful for the majority of the vacation.  Watching Georgia be on cloud 9 was amazing.  Two things to note for future reference - I cannot do roller coasters of any size - both Georgia and I were terrified by Thunder Mountain Railroad...I spent the entire ride with my eyes shut saying the 23rd psalm over and over...possibly out loud :), and Georgia is not a fan of It's Tough to be a Bug...she was in Jon's lap for most of that!  That being said...I truly hope that next time we are privileged enough to go on a family vacation that Jake is with us.  My favourite part of the holiday was watching the Dreams show at Cinderella's Castle while Georgia cuddled into my neck - a moment to treasure forever.  And the permanent reminder of our trip is this...

I brought a copy of Jake's last EKG with me to Orlando, and had Hart and Huntington tattoo this segment on my arm along with a J.  The long straight lines are Jake's pacemaker spike, followed by his heart's reaction to the pacemaker and then the lower part is Jake's natural heart rhythm followed by another pacemaker spike.  I love it.  Just in case anyone thinks Georgia is being left out, I have had her name tattooed on my back for 5 years already :)

Our tans are fading already, but my heart is full with being home and submerged in the chaos of our life once again.  Yesterday the temperature soared to 22 degrees - the first time we've seen above 20 degrees since October 2013, I kid you we hit the playground and the park...I wanted to share this beauty from's my superbaby standing unassisted by the slide...pure joy.

Yesterday during a visit to Costco Jake and I ran into some unpleasantness with a lady who I can only guess was simply ignorant.  She was very rude, insisting that something was "wrong" with Jake and asking if he would always have "that thing on his face"...The encounter left me mad at first...and then uplifted and laughing at the comments made by friends when I shared the experience on Facebook...and then today it's made me a little sad.  Jake is so perfect, inside and out.  He's not what the world considers perfect, but as one heart Mom reminded me, he is perfectly and wonderfully made.  Experiences like that encounter threaten to harden my heart, to make me fold into myself and block out the rest of the world...but I refuse.  I steadfastly refuse!   These are words to live by that I keep on my phone to constantly remind myself that life is beautiful...maybe someone else can be encouraged by them today:

Jake seems to be developing a new bad habit...pulling out his NG tube while in his crib.  We have the tube fully inside his snap up sleepers, so that the only part that is available to pull is what is on his face and a small piece by his neck, and he still gets it.  It's been 3 times in the last week.  It's torture for him and for us to put it back in, and usually ends with him sobbing and worn out from fighting to get away from us.  This is why I wanted a G Tube in his stomach - it's permanent, and very highly unlikely that he could pull it out.  But it's not an option for us, so we'll carry on.  Besides the suffering it causes Jake and the mental anguish it causes me, each tube costs $25, and is shipped from Ontario...this could get expensive if it's going to be a daily occurrence. 

Yesterday Jake was seen at the Pacemaker Clinic in the Janeway, and I'm relived to report that his pacer is working well.  He is 100% paced, meaning that every beat his heart takes is modified by the pacemaker.  At his current rate of use we have 3-5 years of battery life remaining, which is perfect since the intention is to replace it during his next planned open heart surgery - likely at age two and a half to three years old.  The time of his next surgery is determined by several factors, but at the very least they want him to walking well before considering his Fontan.

Jake is still drinking small amounts, and eating well at most meals.  His favorite thing to drink is now chocolate milk :)

I'll leave you with this shot from this morning when Jake had pulled his NG out...this was post bath and just before we put the new tube back in...

No comments:

Post a Comment