Sunday, January 8, 2017

While we wait...

Two and a half days at Ronald Mcdonald House have given me lots of time to think.  There is a huge community rallying around us - our prayer warriors are world-wide, our church family is a constant source of encouragement and love, my Mom and Dad have stepped up once again to care for Georgia and when I need to talk - my friends have got my back.  Thank you all for that.   One day at a time has been my philosophy for a long time, and a wise friend of mine told me recently that when things get too hard for one day at a time, then I need to take it one moment at a time.  I've thought of that every day since.  Waiting is hard, with Jake still in partial isolation, and being in RMH means that he is around more people now so the hand washing is constant, the sanitizing is constant and the worry never goes away.  Jake's surgery is one week from tomorrow - that's 7 more days to keep him well.  I'm using all the tricks in my repertoire - Norwex and YL Essential Oils especially.

Let's talk about food.  You will all know the struggle with Jake to eat normally has been real from day 1.  Because of the severity of his heart defect, at birth he was too weak to breastfeed or bottle feed normally, which led to his dependence on his NG tube for the first 22 months of life.  How I hated that NG tube, with it's constantly being pulled out, and making the skin on his face bleed, and having to pin him down literally so Jon or I could replace it, by the time we got rid of the NG tube Jake would hide away from us when he know what was coming.  It was horrible.  If you missed that part of our adventures with Jake, here's a pic of what the NG was for him...


At 22 months Jake got his G Tube finally, and while it has it's cons it is a hundred percent better than the NG.  Jake has been through mountains and valley's with his oral eating progress and I am always hesitant to say things are improving because he usually proves me wrong but this time it's been a couple of months of steady progress with eating.  Jake seems to be finally feeling hunger, and enjoying some foods for the first time in his life.  Let's break down what Jake ate today, to give you an idea of where he is...Keep in mind that he also gets 1400 mls/day of formula through his tube.

Breakfast: half a slice of bacon, 1/4 of a cake pop :)
Snack: half a slice of bacon, a few bites of raw carrot
Snack: 9 or 10 Salt and Vinegar Chips
Supper: a few bites of roast beef, several bites of cheese, a little of a bread roll

And now he's sleeping and having his final tube feed of the day.

That's not a whole lot of food for the average 3 and a half year old but for Jake it's HUGE....

He got his second piece of bacon today from the Home for Dinner volunteers - he walked up and asked one of them for bacon :) Check it out...


After Jake's recovery from the Fontan is complete, I am hoping to switch our focus to his eating skills and wean him off of that tube.  Ideally, I'd love to see it out by the time he starts Kindergarten.  It seems insurmountable at times, but Jake has proven that nothing is impossible.  Speaking of impossible, Jake has a new T-Shirt that says SickKids VS the impossible.  I can't think of anything more perfect for him to wear.

Ronald Mcdonald House TO is a great place.  It's so calming and cozy, with nothing but support through the employees, volunteers, programs and other families.  On Saturday Georgia will be arriving with Mom and Dad, and then it will really be complete.  I can't wait to see Dad in the kitchen making my favourite breakfast of Egg in a Hole, and Georgia running down the halls with her brother, and my Mom with her cup of tea and smiling face.  Bluebelle will be moving on to arrangement #2 that day with Carolyn and Aaron - thanks so much, guys.  Here are a few of our RMH experiences so far...


Right now as I write this...This is Jake snoozin' on the couch in our room....



Late night hockey with Momma and Dadda in the Jays Care room downstairs...



Playing with his dinkies all along the windowsills of level 4....What a smile!





This is a big week for Jake, with three likely full days of appointments - Tuesday, Wednesday and Thursday.  Jake now shows fear and anxiety with hospital appointments and procedures, so please keep him in your prayers on these days.  Pray for his comfort, strength and that he won't be afraid and will know how loved he is.  "We have this hope as an anchor for the soul, firm and secure." - Hebrews 6:19.




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