Saturday, November 14, 2015

Do you believe?

Tonight Jon and I had the priviledge of volunteering at Ronald Mcdonald House and serving families who were living there, just as we have lived there during our journey with Jake.  It was a great experience.  Heartfelt and wonderful, and truly felt like giving back just a little of what we have been given.  I'm also so thankful for the NL Heart Support Group, and the life long friends I have made through it --- often, they are the only ones who can truly understand how I feel about my son's congenital heart defect and it's impact on his life.  

I have a HUGE Thank You to say as well.  In October our local children's hospital, the Janeway, did it's annual Pyjama-rama Fundraiser and we created a team with the goal of raising $500 in dedicated funds for the cardiology department where Jake has spent so much time and had exceptional care.  Through the donations, Team Jake donated $525 to the Janeway Cardiology department --- THANK YOU! With 1 in 100 children being born with a CHD this is a very busy part of the hospital.

My sweet kids are the light of my life.  Georgia blessed me in ways she will never comprehend the day she came home from school upset because her classmates said that God was not real.  My outspoken six year old told them that God was very much real, and alive in her heart.  In the rush-rush-rush of daily life, I often feel that my messages don't get heard, but this most important message of all was heard.  And I know not only from me - from her sunday school teachers Kathryn and Josh - and from her wonderful Nanna and Poppa.  I am so thankful.  

Jake is once again making the health professionals in his life draw a blank in terms of explaining his progress.  His dietician just simply shrugs and says "I have no idea", and his cardiologist wonders if it could be that he's not absorbing some nutrients properly but really has no idea either.  Jake's diet has been 50/50 with two types of formula for the last year or so - one is high calorie and one is normal calorie.  We recently ran into a supply issue with the high calorie formula and went over two weeks without it.  When Jake was weighed in after those two weeks he had gained A POUND.  A POUND!
So the decision was made to continue on without the high calorie formula because he was vomiting less, eating a tiny bit more orally, and gaining weight.  So here we are, about five weeks after stopping the high calorie food and Jake weighed in at 27 lbs 8 oz last week.  Whoo! So great! 

I had a long chat with Jake's cardiologist last week, and she told me about evidence that is based on 40 years of data, that shows that for children with the Fontan circulation - delaying the surgery until the after the age of 3 has the best short and long term outcomes.  So, we've officially been delayed once again - now we are expecting the Fontan procedure at SickKids in May or June of 2016. Remember the tiredness that I worried over in my last post? That's most likely directly related to the growth spurt that he has been going through.  It's normal for single ventricle kids to slow down and have tiredness increase prior to the Fontan procedure, but for most kids who are on a normal growth curve this happens gradually.  In Jake's case, he has done a year's worth of growing in six months, and this is a big adaptation for his little heart.  Jake's iron and folate levels are also being checked because it's frequently a deficiency in children with single ventricle heart defects.  Jake's iron is normal, and we are waiting for the Folate report to come back.  

In the meantime, my boy is growing, happy and sweet.  His blankies are his most beloved posession, as you can see in the picture below which is from this morning --- Jake is lying down to rest with about 10 blankies on him :)

We also built a snowman this week.  Seriously, we did.

There are months where I feel like life is upside down.  It's topsy-turvy and ridiculous, and makes absolutely no sense at all.  This has been one of those months.  Some days I just feel like shouting --- life is hard.  

life is cruel.

 life is senseless.  

life is beautiful regardless.  

The whole world around me seems to have gone crazy --- most recently with the terrorist attacks in Paris, but with a thousand other events taking place daily in my own town and country.  There are days when I see why people ask - what kind of God would allow this? What kind of love is this? And with my own life as testimony, I don't have an answer for any of them.  I just believe.  Last night I watched a movie titled "Do You Believe", and was blown away by it's message.  I copied down the part that resounded the most with me and wanted to share it with you.  Here it is.

Do You Believe?

I’m not sure any of us ever gets to see the whole picture. the God’s eye view, so to speak.
Tt’s like we’re little children, sitting on the floor, gazing up at the backside of a tapestry that’s being woven.
To our eyes it sometimes looks ugly, the colours are a jumble and none of it makes much sense.
But one day, we’ll no longer be sitting on the floor.

We’ll come around to the other side,
And the genius of God’s handiwork will become clear.
At the center of it all, we’ll see the cross.
But in that immense tapestry, we’ll also see the single unique thread,
The only one of it’s kind and colour, that our own life has added to the piece,
The one thread without which the whole thing, would somehow be incomplete.

Personally, I can’t wait to see His masterpiece.

Do you believe?

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