Romans 5:3-5

"We can rejoice, too, when we run into problems or trials, for we know they help us develop endurance. And endurance develops strength of character and character strengthens our confident hope of salvation. And this hope will not lead to disapointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." Romans 5:3-5

Saturday, 23 July 2011

Time for an update!

Hi!  Its been a while since we've updated on Zach.  The month of June was kind of a blur.  The month began with Perry and I going to the Hypopara conference in Maryland and ended with Zach and I travelling back for a 10 day hospital stay back at NIH where he began his PTH 1-34 injections. 

Then on July 1st we were blessed by the amazing generosity of our community.  The Canada Day Fundraiser was wonderful.  We are so grateful to everyone who came out and supported us.  The total of money raised is not in yet, however we believe it is close to $60,000!!!!!  Unbelievable.   Its hard to know what to say......Thank you  XOXO

We want to let you know that we did find out some more medical concerns about Zach during our stay in Maryland.

They confirmed that Zach does have kidney stones.  However he also has nefrocalcinosis.  This means he has calcium in the tissues of his kidneys.  How does this effect him?  Kidney stones he will eventually pee out...but not the calcium in his tissue.  Calcium in the tissue will eventually lead to renal insufficiency.

They also confirmed that Zach has Calcium in his brain.  We did not know this but were suspicious of it.  It is in both frontal lobes wherever the white matter and grey matter meet....there is calcium.  This is not good.

They also did a Dexa scan of his bones and it showed that his bones are abnormal.  His bones are too dense.  This all plays into his fatigue.

SO, Zach is now receiving the synthetic replacement (PTH 1-34) which is the hormone his body does not make.  The lack of this hormone all his life (7 at time of diagnosis) has led to these calcification's.  They can not be reversed medically.  The injections he is receiving will slow down the process but not eliminate it.

They also showed us that Zach has no enamel on his teeth because of the lack of PTH in his body.  Also, they could tell that he had hypocalcemic seizures as an infant because his permanent teeth are coming in smaller and misshapen.

We are so thankful for your genuine concern and prayers for our family.  We wish you all a wonderful summer and we will post some of our summer highlights too!  God Bless You!  luv t

Doing Labs at the Stollery
"family support"

Doctor's appointment

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