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

Thursday, 25 August 2011

More Angels.....

Zach's Fund Run 

The genuine concern that our family has received over the past few months continues to overwhelm us. So many unexpected blessings.  I want to tell you about two more "angels" that have blessed us.

Melide Mackee and Rebecca George
These two ladies are busy moms who are very involved in our community. 
 On July 24th 2011
they hosted a fundraising event for Zach.
Zach's Fund Run  5km  2011

We were unaware that this had happened until last week when Mel and Rebecca gave us a beautiful memory book of the event as well as a cheque for the Funds that were raised...$1400.00!!!

I want to share with you the note they wrote to us...

To Tanis , Perry & family,

Melide and I would just like to express our concern for Zach and your family.  We can only imagine what you as parents are going through.  That is why we asked ourselves, "what would we do"?  Our answer: "whatever we had to do to keep our child healthy at any expense"!  We realize the financial burden this must bring and decided to help, even if it is just a little.  So we decided to host a 5km FUND RUN for Zach.  With the help of local businesses we were able to host this event with very little cost.  Zender Ford, Fox Maple Homes & Stony Plain IGA are just a few that deserves big thanks.  As for Melide and I we are just happy to help!
Melide Mackee & Rebecca George

This entire journey has been a very humbling experience.  The love, concern and support we have been given is amazing.  Thank you Mel and Becky.  Thank you to your supportive husbands and families.  It is impossible to adequately express our gratitude.  Thank you so very much. xo

The kids did a 1km Fun Run.....awesome!

We would like to extend our thanks to
 Fox Maple Homes, Zender Ford, Chris Hansen Marketing, Stony Plain IGA, First Avenue Vending Services, Zurich Insurance, Intact Insurance, Drayden Insurance and to everyone who took part in this event.

As a side note
When we sat down with Zach and showed him the album they made and explained to him what these folks were doing to help him, he said "I just can't believe all these people care about me..."
God Bless

Sunday, 21 August 2011

Happy Birthday Zach

Zachary turns 9

mommy made me angry bird cup cakes

Today was Zach's 9th birthday!!!  He had a wonderful day.  Friends, cards, movie theatre party, presents, cupcakes, phone calls....a FULL day!  He is very thankful. 

Zach and his buddy Trahan.  This family is very special too us.  We met 8 years ago on the ward at the Stollery.  These two boys share a very special bond.

Nine years ago we began this amazing journey that we are on.  We are gratful for the love and support we have and the friends we've made on the way.

This week we've had some pretty cool things happen, stay tuned.....

Monday, 15 August 2011


This is where Zach hangs the cannula for his oxygen....funny.

We all need it.  Some more than others but without it, functioning in our daily routines can be challenging.  Zach has had sleep issues since birth.  When he was a baby, in an 8 hour span of "sleep" he would stop breathing between 80 and 90 times.  They diagnosed him with Central Apnea (brain stem related) and he was put on oxygen.  We now know that Zach was having the Apnea's because of the lack of PTH in his body.  Zach is still on oxygen and it  does help with the apnea's.  However, 7 years of undiagnosed PTH deficiency (hypoparathyroidism) has left him with damaged nerves and exhausted muscles. 

What does this have to do with sleep?  Well Zach has Periodic Limb Movement Disorder...its kinda like Restless Leg Syndrome on steroids.  So Zach's body flexes ALL... NIGHT... LONG.

To get an idea of what I'm talking about, tense all you body muscles (especially your legs) hold them tight for 3 seconds then release them for three seconds.  Keep doing this rhythm for as long as you can. Now imagine trying to do that and fall asleep and stay asleep.  That is what it is like for Zach every night. 

It is hard to lay beside him and see and feel his body do this.  Seeing him wake up over and over.....never being still.  Usually he looks his worst first thing in the morning.  When our other kids are Rosy cheeked and sleepy eyed, Zachy's face is pale and so dark under his eyes.  We were warned that the PTH injections may cause more severe muscle and bone pain.....tada.  This fall he will have another full sleep study done and compare it with the one from November of 2010.  This will be done to help us determine a way to help Zach sleep better.

Sleep study prep November 2010

We are grateful to God for the love and caring support we have from so many friends and family.  For the blessings that have come from the genuine concern of others.  We are thankful for God's provision and for the lessons we have learnt in the process. We are thankful for the Doctors here and In Maryland who are eager to help Zach with his rare disorder.  Most of all we are so thankful because we know that one day Zach will have a body that is strong and whole...not lacking anything.  That God in His Word promises a place where there is no more sickness, no pain and no parting. 

The Promise
I never said that I would give you silver or gold
Or that you would never feel the fire or shiver in the cold
But I did say you'd never walk thru this world alone
And I did say don't make this world your home

I never said that fear wouldn't find you in the night
Or that loneliness was something you'd never have to fight
But I did say I'd be right there by your side
And I did say I'll always help you fight

'Cause you know I made a promise that I intend to keep
My grace will be sufficient in your time of need
My love will be the anchor that you can hold on to
This is the promise, this is the promise I've made to you

I never said that friends would never turn their backs on you
Or that the world around you wouldn't see you as a fool
But I did say like me you'll surely be despised
And I did say My ways confound the wise

I didn't say you'd never taste the bitter kiss of death
Or have to walk thru chilly Jordan to enter into rest
But I did say I'd be waiting right on the other side
And I did say I'll dry every tear you've cried

'Cause you know I made a promise that I've prepared a place
And someday sooner than you think you'll see me face to face
And you'll sing with the angels and a countless multitude
This is the promise, this is the promise I've made to you

So just keep on walking don't turn to the left or right
And in the midst of darkness let this be your light
That hell can't separate us and you're gonna make it thru
This is the promise, this is the promise I've made to you
Oh, this is the promise, this is the promise I've made to you

Friday, 12 August 2011

Good Days vs Hard days

Thought it was time I did an update.  I hope you are all having a good summer.  We have had some great moments and some tuff ones....thought I'd share them.
A Great Day!
This is a great day! Zach laughing as the water sprays him and he is able to Ski on this cool platform trainer my parents got for their grand kids.  Zach skied lots during our holiday at Kimball Lake ..... I cried  every time.   This year we've seen such highs and lows in what his body is able to do physically.  From being in a calcium crisis where he barely moves or responds, to this smiling happy boy in the picture!  I am so grateful for the moments where he is strong and determined.

A Hard Day
On Tuesday and Wednesday this week, Jake and Zach took part in a 2hr per day Soccer camp.  Jake was super excited.  Zach was VERY anxious and scared.  Within minuets Zach was struggling.  There were so many kids, lots of people and he was overwhelmed.  My heart sunk as I watched him fight the waves of tears and anxiety that were washing over him, crushing.  He was sad, crying, shaking.  He kept saying "I don't know what is wrong, I don't know why I'm crying....I just feel sad". The coaching staff was great and I was able to explain the reasons for Zach's behaviour.  He wants to try, but somehow he just feels defeated.  So much of his life has been a struggle...walking, talking, riding a bike, reading...nothing comes easy for him.  So we are trying  to instill in him "Determination, Drive, to press on, to keep trying."  Needless to say the first day of soccer camp has a hard one, but it was a necessary step for him.  To learn to keep trying.

A Great Day!
FC Edmonton Soccer Staff
Day 2 of soccer camp would prove to be much better.  Zach had a better idea of what to expect and what was required of him.  He had already managed to make some Very special friends with the FC Edmonton players and staff! 
Jake getting autographs from the team


Thank you to FC Edmonton, to the staff, the coaches and players. The time and patience that you gave was
amazing.  Thank you for treating Zach with such genuine concern.  We truly appreciate everything you did for our family, May God Bless you!  xo