This is a test, I pray this works.  t

On the 4th of May, Walmart presented Zach with....

A generous gift of $3000.00 and an Ipad!!!

Zach on the floor at the HPTH conference in Maryland. 

June 2012 

Zach and another little boy who was at the conference with his parents. 

These devices really come in handy!  lol!

We were and are still amazed at the generosity of the staff at the new

Super Walmart here in Spruce Grove.  May God bless them for their kindness and concern for Zach.

THANKYOU!!!!

XOXOXOXOXOXOXOX





This post is PAINFULLY overdue...

We have had an increadably crazy past two months and I promise to catch you all up to date! However, today we want to celebrate the one year Aniversary of the

"All For Him"

Fundraiser that was held for Zachary on July 1st, 2011.

Perry and I can hardly believe all that has happened.  18 months ago we were so sad and discouraged.  Zach was not getting the right care for his disease and we did not know what to do.  We cried out to God to make a way where there seemed to be no way...and He did.

He opened the hearts of many people and our help came.  The generosity that we have experienced has been very humbling.  We are forever grateful to all of you who have and continue to give to Zach's Fund.  On June 3rd, 2012, Zach and I made our 3rd trip in less than a year to the National Institutes of Health in Bethesda, Maryland.  God continues to amaze us at how He works out all the details.  We are so thankful for the Myshack\Secord families and their friendship.  Our  connection with them is special, we've shared laughter and tears.  We see the grace of God in their lives and are thankful for the blessing of their friendship.

  To the amazing staff at Anixter ( Perry's work). They have shown us genuine compassion and understanding beyond what most employers ever would.  They were instrumental in helping Ashley and Jessica with the fundraiser preperations and continue to support us.Thank you SOOOO much!

The fundraiser inspired so many to help Zachy.  We want each and everyone of you to know that all you've done is appreciated.  There truly are no words that would convey the way we feel.

 Our hearts  overflow with gratitude

  Thank you, Thankyou, Thank you!!!

XOXOXOXOXOXOXOXO

Love, Perry and Tanis

Jacob, Zachary, Olivia and David

An Answer

The human body is amazing.  It's complexity is truly beyond comprehension.  Just over TWO years ago Zach was diagnosed with Idiopathic Hypoparathyroidism
(Idiopathic is a fancy doctors word for "we don't have a clue").

 If you've been following this blog then you will remember that this winter we had Zach's blood tested to see what mutation he has and as it turns out, he has a NEW variant that's not been documented.  This prompted the Geneticist to analyse both mine and Perry's blood
to see if we genetically passed it to him.

Neither Perry or I carry the A784V variant that Zach has.

 "This result indicates that...this variant has arisen de nova in the child, providing support that

 A784V is a disease causing mutation."

I've come to the conclusion that the best part about Genetics is that
 there really is no right answer..lol. 

So, if you are lost and confused...my work here is done..... 

 Here is some Genetics 101

De Nova Mutation:  An alteration in a gene that is present for the first time in one family member as a result of a mutation in a germ cell (egg or sperm) of one of the parents or in the fertilized egg itself

Disease causing mutation:  A gene alteration that causes or predisposes an individual

to a specific disease

http://ghr.nlm.nih.gov/

More info...pretty amazing....

The first genome (a complete set of DNA) cost three billion dollars to sequence and took ten years – they can do one now for a couple thousand dollars in a few days. That means you can scan through the entire genome in any affected individual for mutated genes. The problem is we each carry hundreds of such mutations, making it difficult to recognise the ones that are really causing disease.

The solution is to sequence the DNA of large numbers of people with the same condition and see if the same genes pop up multiple times.  And that is where it gets interesting.  Zach has a NEW mutation that has not been documented. So although there are a few people with a mutation in the CASR gene, their mutations are in a different location than his.

Our bodies are so complex and each one so unique.

Save on....Support

Last June, Global TV Edmonton ran a story on Zach and our situation.  This was "instigated" by Ashley and Jessica.  They called up SuLing Goh at Global an told her about how they wanted to help our family so that we could get to the states for treatment.  When it aired on the 6 o'clock news a man named GEO was watching.  He felt the need to reach out to our family.  He contacted Global and they put him in contact with Jessica and Ashley.

On July 1st last year at the fundraiser, they surprised us with $1800.00 in Save On Foods gift cards!  They also promised us that they would continue to support Zach.  True to their word, on March 24th, 2012 Save On Foods opened up The Brand New Spruce Grove Location.  We were invited to attend the opening of this beautiful store.  They held a silent Auction for Zach and raised $3000.00!  The Silent Auction items were AMAZING and we are humbled by the generous support of this

community we live in.

Perry and Geo and the kids at the opening of

The Spruce Grove Save On Foods

Perry,  Steve and the kids

Steve is the store manager of the

 Save On Foods in Spruce Grove

I can tell you one thing, accepting these generous gifts does NOT get easier.  It puts a lump in our throats and our hearts overflow with thankfulness.  For so long we felt  alone in this battle.  I just wanted to find another family somewhere who had a child with the same disease as Zach.  I thought that would make it easier.  However, God saw fit to give us a child with a disease that truly is "one of a kind".  Then, He surrounded us with a supportive community that has blessed us far and above what we could ever imagine. 

Thank you for your prayers, your love, support and generosity.

May God Bless you, everyone!

XOXOXOXOXO



Update

Hi!  We are still basking in our memories of the Make A Wish trip.  It was so wonderful.  Many of you have been asking "what's up" so here is  an update.

Within the next two weeks we should hear the results of the genetic testing that is being done on Perry and I.  This is being done to determine the cause of Zach's "current diagnosis..."heterozygous C>T nucleoitde substitution in exon 7 of the CASR gene". LOL.  Regardless as to what they find out, we have peace and know that even though this is "new" to the doctors, God is Sovereign over all His creation.  Nothing takes Him by surprise. 

Our next trip to Maryland will be from June 6th to the th.  This trip has two purposes.  From the 6th to the 9th, Zach and I will be attending the 6th annual Hypoparathyroid Conference in Rockyville Maryland.  Its about 20 min. from the NIH hospital.  I am very excited to go and learn more from the amazing Doctors and researches that are there.  Perry and I were so blessed to go last year and that is how we finally connected with Dr. Winer and how Zach got into NIH!

Last fall, they asked if I would speak at the conference this year.  This is the list of speakers:
Maria Brandi, MD - University of Florence, Italy
Michael Mannstadt, MD - Harvard University, Massachusetts General
Harald Jueppner, MD - Harvard University, Massachusetts General
Michael A, Levine, MD - Children's Hospital of Philadelphia
Dolores Shoback, MD - University of California, San Francisco
Aliya Kahn, MD - McMaster University, Ontario, Canada
Daniel T. Ruan, MD - Boston, Massachusetts
Michael Collins, MD - NIH
Rachel Gafni, MD - NIH
Karen Winer, MD - NIH
Bart Clarke, MD - Mayo Clinic, Rochester, MN
Barry Bennett, MD - Idaho Falls, ID
Martin Nusynowitz, MD - retired; Keynote Speaker
Glynn Voisin, Esq.
Tanis Klassen
Jim Sliney, Jr - Research Assistant Columbia University
For more information here is the link
https://www.hpth.org/event/6th_Patient_Conf.html

After the conference is done on Saturday, Zach and I will head to NIH for 2 solid days of Doctor appointments and testing.  We get back to good old Alberta on the 13th.

Zach has been doing very well.  They are keeping his calcium in the lower range to prevent an increase in the calcification's in his body.  This is necessary, however it does make him more symptomatic.  He handles it very well and is getting very good and "knowing" what his body needs.  We've had some concern regarding his joints.  I will post more about this latter.

We are thankful for all the prayers and concerns.  We cherish your words of encouragement and support.  Have a great week! luv t

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".

Countdown to Rare Disease Day

This February is special, it has 29 days.  I believe this only happens once every 4 years...Its rare!  LOL!  So I think its kind of cool that In Canada and the US they Celebrate the 29th of February as

 " Rare Disease Day". 

http://www.rarediseases.org/ 

At the NIH hospital that Zach goes to in Maryland, they have a big celebration. 

You see, one of the hardest things about a rare disease/disorder is that its rare.  Not alot of information available and often not great treatments either.  However when we see all these rare cases together in a group...we don't seem so rare anymore.

Zachary has Chronic Idiopathic Hypoparathyroidism.  The prevelance of this condition is one in a million. This is a symptom of a greater disease.  We are waiting for his lab results to come back from Maryland.  Hopefully, by the 29th of February, we will know what rare disease Zach has. 

Zach last year at the Stollery radiothon

We are continually encouraged by your prayers and concern for Zach. 

God Bless

XOXOXOXOXO

Update

We are back into the swing of routine after a much needed Christmas break.  We had a great Christmas with about the right amount of "busy" and "relaxing". 

We are humbled again and again by the out pouring of care and support from so many.  Your prayers and encouragement are such a blessing to out hearts.  So much kindness....thank you!  XO

A couple years ago I happened upon a lady in the mall who lay unconscious.  She is diabetic and was in a diabetic comma.  I was able to get her some juice and stay with her and her husband while they waited for help.  We bump into each other now and again here in town.  About a year (or so) ago she received an islet transplant and the change in her health is AMAZING!!! 

Just after Christmas she came into the store to see me with all her boys in tow.  They had collected bottles and wanted to give the earnings to Zach.    This is the note they gave to us,

"..We pray that Zach is doing well with his treatments.  The boys would like to donate some of their bottle money to help Zach.  Best regards, Gabe, Nathan, Evan and Ben I hope you get better, I pray for Zach."

Humbling.

 We are so grateful for the generosity of so many that have blessed us in SO many different ways.

Thank you.

Zach has had strep again since Christmas and did 10 days of antibiotics.  He has a bad cough and a sore throat.  We are waiting for the genetic testing to come back from Maryland...trying to wait patiently.

Thankful for your prayers.

The Klassen Christmas Letter 2011

As I pour myself a cup of coffee and sit down to write this letter I am at a loss to know where to start. In some ways, this past year has been one of the hardest, most challenging years we have faced as a family.  However, those memories are overshadowed by the tremendous love, support and generosity we have ever known.  Where do we begin and how do we explain the deep blessings we have received.

Could we with ink the ocean fill, and were the skies of parchment made;

Were every stalk on earth a quill; And every man a scribe by trade

To write the love of God above; would drain the ocean dry

Nor could the scroll contain the whole, though stretched from sky to sky.

Favourite old Hymn



One year ago we were going to sell our home. we had sold our most reliable vehicle.  This was all being done because we knew that Zach needed to go to the states for medical care.  We were sad and scared.  We didn’t know what to do.  Then amazing things began to happen. 

 The generous staff at Anixter (Perry’s work) began raising funds so Perry and I could attend the Doctor’s Conference in Maryland.  Their outpouring of concern was humbling.  This kindness hasn’t stopped.  From the recycling that they give us to cash in at the bottle depot, to Todd and his awesome milk coupon’s (LOL).  The beautiful gifts we received from the many Anixter locations all over Canada.  We are so thankful for them and their support and for being such an understanding employer.

Then there are the Myshak and Secord families. God truly used them to give us hope when we had reached the end of our rope.  They went above and beyond to bring help to us.  Their kindness and generosity did not end with that event. Daily they bless us with their concern and friendship. We are so grateful for them.

“Dear Children, let’s not merely say that we love each other, let us show the Truth by our actions.” 1 John 3:18

Then there is the outpouring from our Community.  There are SO many!  To everyone who donated items for auction, for the garage sale and who provided food and fun. Many of you put on fundraisers for Zach and our family that we didn’t find out about till after the fact!  Again we are humbled by all the generosity.  The List is endless.  We want to thank everyone and pray that God would Bless you as you have blessed us.

“Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that works in us.”  Ephesians 3:20

We want to thank our amazing staff at The Country Pumpkin.  Your commitment to the store and dedication to it is a beautiful thing.  You make it a great place to work.  This hasn’t been an easy year for lots of different reasons.  Thank you for always working so hard.  Know that Perry and I appreciate you and your families more than words can express.

We want to tell you a bit about our four beautiful Children,

Jacob, Zachary, Olivia and David.

Jacob

Jake really enjoys school and hanging out with his friends.  He apparently has a knack for learning new languages!  He started Spanish last year and uses it constantly... unfortunately know one else in our home speaks Spanish...LOL!  We figure there must be a genetic predisposition to so easily learn languages as Perry’s Grandpa could speak seven! In June at the awards night, Jake was given the “discipleship award” for his class and this fall he was voted in as the class rep for student council.  Jake is a wonderful, responsible boy.  He is a great big brother and we are very proud of him.

Zachary

Zach Loves water, dolphins, whales...pretty much any marine life.  He is looking and feeling so much better now that he is getting the hormone his body doesn’t make, PTH.  He loves school and gets irritated when he has to miss because of labs or Doctor Appointments.  He enjoys playing with his siblings.  They turn their beds into deep sea caverns and play “Pet Island”.  He is so good at including everyone in his games.  He is our tender-hearted but tuff little boy who daily is a reminder to us of the Grace of God.

Olivia

Olivia, are precious little girl.  She LOVES school, she is in grade one. Her teacher tells us that her printing looks like that of a grade 3’r. She is an amazing little artist who is helping keep Crayola washable markers in business!  She likes to “decorate” her room and has even turned it into an art gallery for all her pictures. Olivia enjoys the outdoors.  She runs across Auntie Jody’s yard with her arms in the air yelling “FREEDOM!”  (LOL)  Olivia has a way of making everything she touches turn out beautiful, she is sugar and spice.

David

Then there is Davey. Davey is our little jokester.  He keeps us all laughing with his quirky personality.  He enjoys preschool and playing with his buddies.  He misses his big brothers and sister when they are at school and can’t wait till he is big enough to go with them.  He is our baby and his light hearted conversation can make you laugh on the hardest of days!

When Perry comes home and proof reads this he is gonna say, “It’s too long!”  We have been married 14 years and I’ve never written a Christmas letter, it will probably be another 10 years before I do it again...so I’m gonna make it worthwhile!

There is a group of people that we need to thank.  They are the constant in our lives and our support through the toughest of times.  We are so grateful for our family, our Church family at GRBC, our LWCA family and our close friends. The journey we are on has been difficult but God has brought you into our lives to help carry this load.  Sharing our difficulties and needs with others has been a blow to our pride.  It was finally in the acknowledging that we cannot do this on our own that true peace and help came.

 We like this quote,

“Following God’s call isn’t easy.  He expects us to trust Him explicitly, and yet He doesn’t ask our advice on decisions that may impact us dramatically.  He doesn’t tell us His specific plans at any given point in our lives.  He doesn’t always shelter us from adversity.  He tests our faith to produce endurance and spiritual maturity – tests that are sometimes painful.  He makes some promises that we’ll never see fulfilled in this life.”

We know that God has a plan for each one of us.  We may not always understand “what” is going on, but we know the “why”.  All things happen for one reason, to bring Glory and Honour and Praise to God...It is All for Him.

We want to wish you a Very Merry Christmas!  We are thankful for your prayers and concern for our family.  When we look back over the year the words that come to mind are Generosity, Compassion, Genuine, Abundant, Grace and Love.  May God bless each and every one of you.  May you know the true meaning of Christmas, may God draw you to Himself and may the Peace only God can give rule in your heart. Amen

 

Praying for Hope

We would like to ask you all to pray for a little girl in Calgary named "Hope".  We do not know this family or all the details surrounding her current state.  What I can tell you is that she is on life support and her condition is very unstable.  Last week she was air ambulanced from Calgary to Edmonton for emergency heart surgery.  She is now back in Calgary and things are not looking good.  They are asking everyone to pray for Hope...

"At present Hope is basically
comatose and we are struggling to not feel disheartened in this. She
should be waking up according to doctors.....We are clinging with all our
might (which feels very small right now) to the knowledge that God
make all things work together for good for those who love him."

Pleas pray for Hope and her family 

t

Rough week

Hi, so Zach has had a tough week.  For reasons we are not completely sure of, his calcium took a dive and was really low.  We had to go for labs Monday, Wednesday and Friday.  He has been very emotional, anxious and tired. Please pray that his calcium comes back up.  His levels have been so good since going on the PTH we kinda forgot how awful he feels with low calcium.

As you know we have been waiting for months for the Alberta Government to approve our request for the  Genetic testing that we need so they can determine the reason for Zach's hypoparathyroidism.  We have not heard from them, however God has provided another way to get it done. 

Our Doctor at the Stollery requested the specimen kit from Gene DX, they sent it to his office and on Friday he pulled Zach's blood!  Tomorrow we will Fedex it back to Maryland and then in 8 weeks we should know the name of Zach's disorder.

We have waited for what seems like forever to know what it is that Zach has.  As a parent, you want your child to be healthy and happy and when they aren't you just want to fix it.  Knowing what Zach has may shed some light on his medical needs.  "If you know the cause, you can anticipate the problem," this is a quote from a Doctor at the Hypopara conference.  It will enable us to be more proactive in his care, rather than reactive.  Knowing what it is will help us care for his needs and thus effect Zach's quality of life. 

We know that this is just "information".  Only God knows each and every detail of Zach's health.  We have learnt that know matter what the Doctor's say, think or do...or don't do (lol).  God is Sovereign.  We put our hope, faith and trust in Him.  It is hard at times to stay focused on "the things above"  especially when Zach's calcium is dive bombing in the other direction.  However, through the grace of God we just take each day as it comes knowing God has laid this path before us.

We are so thankful for your prayers and concern.  God Bless  xoxo

Zach with his 2 blood samples. 

 One to test for Calcium Receptor Gene (CASR) and the other to test for the  AIRE Gene

 (Autoimmune Poly glandular Syndrome type 1)

To Bethesda and back in 3.5 days.

NIH December 4th to 7th   2011

Zach in the cockpit of the Airplane that flew us from Minneapolis to Dulles.

lucky bum....

Well it was a quick trip!  They did labs, scans and saw Dr. Winer.  We are tweaking his doses of PTH and they are trying to get his magnesium to come up and address the pain he is having in his joints.  Zach had lots of fun and as usual he makes friends wherever he goes.

Dr. Winer and Zach

This is Zach with his back to the Children's Inn. He was very excited to stay there,

 "it's kinda like a hotel but way cooler!"  Zach

Like decorating cookies...

Or playing with Viola the therapy dog.  Tho other little boy in the picture is from Newfoundland.  They've been coming to NIH for 4 years.

Or making Christmas ornaments.....

The Hospital and The Children's Inn were beautifully decorated for Christmas.  We are so thankful to be able to take Zach their where he can see Doctor's who have seen kids like him.  We have a story to share with you....I will post it shortly.  xoxo