Wish trip

Thought I'd post some more pictures from our trip!

We keeping looking at the pictures over and over....somebody pinch me!



Make A Wish

Zachary's Wish.....to swim with a Dolphin...

Jenny and Zach. 

Zach absolutely adored her..you can see it in his eyes.

From March 12th to the 20th our family was blessed to go on a Very Special trip.  Last summer Zach's paediatrician and his amazing staff recommended Zach to the Make A Wish Foundation.  Zach has always loved water, it was one of the first words he ever said.  Zach loves anything and everything to do with water.  In the past few years he has really become "obsessed" with the ocean and anything that is in it, however one "mammal"  in particular is his favourite...the "bottle nosed" Dolphin.  When they asked what his one wish would be...it was of course to swim with a Dolphin,

 and his wish came true! 

It was an amazing trip and not only did Zach get to swim with a dolphin, so did our entire family!

Jake and Jenny

Jenny and Olivia

I Love Olivia's little white teeth and Jenny's too!

Perry getting pulled thru the water with Jenny

So COOL!!!

Davey, Jenny and I.  Such a special moment.

This day at Discovery Cove was more than we could have ever hoped or dreamt.  We floated down the Lazy River, spent 2 hours in the Aviary feeding tropical birds out of our hands, swam with stingrays and so much more.  It was an unforgettable day.  We could have got right back on the plane and come home...but Make A Wish planned a WEEK long holiday that was just AMAZING!!!!

The following days we spent at Aquatica and a couple other parks.  The generous staff at Discovery Cove upgraded our passes so that we were able to spend a full day at Sea World.  Our whole family loves the Orca's and Zach has taught us that they are not really whales

but a kind of Dolphin. 

We had Front row seats!  It was AWESOME!!!

Another thing our kids love is African Animals. So, Make A Wish also gave us a day at

Disney's Animal Kingdom.  Amazing..

Kids at the Safari.

We decided to take our kids out to Clearwater to see a famous Dolphin named "Winter".  Winter was rescued and then lost her tail.  She is at an aquarium in Clearwater where they care for injured marine animals.  Our kids loved the movie and have been very concerned for her.  It was a very special day.

Looking at Winter and Panama

 We are so blessed to have had this experience and share it as a family.

  Thankyou to everyone for you prayers. Even though Zach has a rare disease and still faces many challenges, God continues to show us His kindness and His faithfulness beyond what we could ever wish for... 

 "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us,  to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen".

Ephesians 3:20 and 21

Discovery Cove 2012





The Make-A-Wish Foundation® of Northern Alberta"We grant the wishes of children with life threatening medical conditions to enrich the human experience with hope, strength, and joy".

http://www.makeawishna.ca/wishes/



Stollery Radiothon 2012

Zach and I getting ready to go on air with CISN country.

We've been in Alberta 9 years....it is hard to believe. 

Leaving our family back in Saskatchewan 9 years ago was one of the hardest things we've ever done.  I remember crying and saying "I miss my mom".  It was so difficult, but it had to be done. 

We look at this picture of Zach sitting by my side at the radiothon and know that if we had not moved....

he would not be here.

God has watched over him and has provided in miraculous ways for him.  Thankyou to everyone for your concern and support. The kind words, prayers, cards and hugs are a beautiful blessing to our family.

Zach has been feeling pretty good over the past week, his calcium had been low and so they increased his PTH and his numbers came back up.  We are all getting pretty excited about the MAKE A WISH trip.  We are going to Florida.  They haven't told us much, but what we DO know is that Zach is going to get to swim with a dolphin...it will be a dream come true for him.

Figured I'd put some Radiothon pic's from past years...enjoy.

Zach on the air with Dr. Adamko

Zach and the guys from THE TEAM

2011 Stollery Radiothon



February 29th 2012 Happy Rare Disease Day!

:

"Hypoparathyroidism is a rare disorder in which the body produces insufficient levels of parathyroid hormone, the principal regulator of calcium and phosphorus. When the body has too little parathyroid hormone, blood calcium levels drop and phosphorus levels increase, which can cause muscular and neurological symptoms, as well as bone impairments. There is no approved hormone replacement for hypoparathyroidism. It is one of the few remaining hormone deficiency syndromes in which replacement therapy using the native hormone is not clinically available. Hypoparathyroidism is currently managed with large doses of calcium supplementation and active vitamin D therapy to raise the calcium levels in the blood and reduce the severity of symptoms. Over time, calcium may build up in the body and result in serious health risks, including calcifications in the kidneys, heart or brain".

Tomorrow Zach and I will be doing the radiothon for The Stollery Children's Hospital.  We will be on

Cisn Country at 9:15am

http://www.cisnfm.com/

CHED at 10:05am

http://www.630ched.com/

Thank you to everyone for your love, support and prayers.

XOXOXOXOXO

Thank you....such kindness..



Rotary Club of
Edmonton Strathcona
 "The Friendly Club"http://edmontonstrathcona.rotary5370.org/

On January 31st, 2012 we were treated to a wonderful lunch with some very amazing people with the Rotary Club of Edmonton Strathcona. 

Through friends of friends, this group of dedicated "servers" heard about Zach and his need to travel to the US to get the medical attention that his rare disease requires.  The membership presented Zach with a cheque for $3,000.00 to "help with the expenses related to the

 future medical care".

This continuous outpouring of generosity is so overwhelming.  Perry and I are humbled and so thankful. We want to Thank the Rotary Club of Edmonton Strathcona for caring and for blessing Zach and our family with this gift.  On the letter we received, on the bottom it states,

"Service Above Self"

This truly is a quality that we are to pursue.

Thank you so much,

May God Bless You.

Distraction

MAKE A WISH

A few months back Zach was granted a wish through the MAKE A WISH foundation. 

Zach's wish is to swim with Dolphin's.

Today we were given the date that our family gets to go on this adventure.

They are sending our family to Florida!

We can hardly believe it!  This is a great blessing and is happening at such a great time.

We will keep you posted on the details as they share it with us.

We are so thankful for the emails, phone calls and notes we've received this week.  Your encouragements and prayers are graciously received.

God Bless

XOXOXOXOXOXOXOXO

Lab Results...

We have received the results from Zach's genetic testing.  It is not what we expected and we are still sorting it all out in our heads.  Zach was having two genetic tests done.  The CASR gene and the AIRE gene.  We were hoping for one or the other.  We just want an answer to this 9 year question as to what gives Zach so many health issues. We did not get that answer. 
What they can tell us is that Zach is "heterozygous for a C>T nucleoitde substitution in exon 7 of the CASR gene". (really helpful  LOL).  Zach has what is called a "Missense Change" (A784V) and this variant has not been reported on.  In other words, Zach has a NEW change in a gene that has never been seen or reported on......ever...in the known world.
So now what?  Well, first they need to do a clinical evaluation on Perry and I.  So we will be sending our blood to this same lab for them to test.  This needs to be done to assess the biological significance of this "missence Change". 
As we get more information we will post it on the blog.

It is hard to say how we feel.  We seem to always be hanging on "the next test" or "the next appointment".  I tend to get my hopes up and think, ok they will figure it out... and then they don't.  I used to wish that Zach at least had something "common" so I could find another mom  with a child with the same disorder.  Someone who would know exactly what its like to have a child like Zach.  I know that God gave us Zach so that I would learn this lesson.  That there is only one who knows everything. Only one who fully understands. Only one where I can safely place my hope, my faith and trust.....Jesus.  He alone knows what Zach has and what he needs.  He is Sovereign over everything.  I am reminded of this again and again. 

Psalm 139:14

"I will give thanks to You,

for I am fearfully and wonderfully made;

Wonderful are Your works, And my soul knows it very well".