Thursday, September 3, 2015

It's a brutiful life.

Life is brutiful.  I've said it before, but I truly believe it - it's a brutal and beautiful life.  I started my day today with the image of a 2 year old Syrian boy named Aylan who drowned and washed ashore in Turkey when his family attempted to escape persecution and become Canadians.  I can't even deal with the pain that my heart feels over the suffering.  It's instant focus and clarification in my own life.  My prayers are with that boy, but I know that he is now free from pain and suffering and with his Heavenly Father.   It's hard to transition away from that thought, but the world keeps on spinning even when you feel like the pain should stop it in it's tracks.

There is still beauty in the world, but it hardly seems right that both moments can coexist.  Look at the beauty from my day today, thanks again to the very patient and talented Vanessa Pretty.

At Jake's last weigh in, he was back up to the 15th percentile with a whopping 25 lbs 11 oz on his tiny frame.  For the first time, I am noticing a real solid weight in my arms when I hold Jake even for a short period of time.  I know that his pattern is a roller coaster of ups and downs with his weights, but for today I'm embracing my 25 lb 11 oz Jake and the little bit of chub that seems to be developing - most noticeably that his pacemaker is not so prominently stuck out from his little belly! I love it, and I thank God for it.  It's a hard road of reflux and tube feeds but we are running through it together.  In terms of reflux though,, the new med Sulcrate did not help Jake's reflux so we have discontinued that and restarted the Domperidone to see if that will help at all.  A side effect of domperidone (TMI warning!) is soft stool though, so we'll see if that interferes with his weight gain.  For now, Jake has graduated to weigh ins every second week - so much freedom! 

Jake's genetic testing came back NEGATIVE for the Loveless hearing loss gene - and I couldn't be more thankful.  Both of my kids had a 50% chance of carrying (and thus being affected by) this gene - and neither is a carrier.  I know most people look at me and say that I manage just fine with the hearing loss, but I would still never wish it on any one.  Jake often tells me things that happen before I hear them - like tonight when I was putting him to sleep upstairs Jon came home and Jake popped up and said "Dadda home!" before I heard a sound.  My little darlings.

A HUGE  thank you is due to everyone who donated blood during the 2 day blood drive in Jake's honour.  Our goal was 100 donors, or roughly 300 pints of blood. 106 PEOPLE DONATED!  You all rock, and I thank you so much for honouring my Heart Warrior with your own gift of life.  Next year's goal - 120 donors!

 A proud sister representin'

 No matter how busy you are...

 Poppa donated too!!!

Jake driving the blood mobile :)

In our world there always seems to be a cause for concern.  Lately we've been finding the costs of feeding tubes/and their acessories very oppressive.  I find myself daily searching Medical Supply Exchange sites on Facebook, and with the help of a great friend (That's you Dominique!) I've managed to save literally hundreds of dollars on Jake's day to day supplies - but the cost still adds up.  More than that though, we have discovered that Jake's oxygen saturations are almost always lower on his left hand side.  Significantly lower.  For example, tonight's resting oxygen saturation is 67-70 on the left side, and 88-89 on the right side.  We are tracking this, and our cardiologist is aware, and we're going to explore this at our cardiology visit next week.  Jake's safe oxygen sat range is above 75, but preferably above 80, so I'm worried that this low sat on one side of his body is going to affect him in some detrimental way.  There is always something.

Here are some highlights from our family life since the last update.

 St. John's hit 30 degrees celcius for only the 12th time in the last 30 we went to the beach!!!

 Look at the determined face on this Heart Warrior....

 Jake's G tube malfunctioned but he's still smiling after Momma and Dadda replaced it at home!!!

 Our beloved dog is having major health issues, but we're keeping him comfortable and enjoying each day with our Lukey boy.

One benefit of having a big sister - being dressed up like a doll! Check out Jake's shoes - they belong to an Ariel doll!

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