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, 30 April 2011


Hi! So Wednesday we did the emerge thing, Calcium was low.  We had to go in Thursday and Friday to check his calcium levels.....they are low and his PTH is low.  He has been really tired and his tummy is hurting.  It may sound crazy but I can't wait till Monday.  We are hoping and praying that they will figure out his tummy problems and in doing so, find him some relief.  We have to be at the Stollery at 6am.  His OR time is scheduled for 8am.  Thank you to everyone for your thoughts and prayers, we truly have an amazing group of people supporting us......Thank you.  Love Perry and Tanis

Thursday, 28 April 2011

Pepsi Proposal for The Stollery

The Stollery has put in a proposal to Pepsi.  Its some sort of contest.  Anyways you can check out the video proposal on utube.  They used a picture of Zach, he's playing his I TOUCH.  Its a cute picture.

Me and my auntie helper

Zach wanted auntie Danielle to come to the hospital tonight and see him.   It was pretty cute.  He said, "she would make sure I wouldn't be bored."  Love ya auntie D

Wednesday, 27 April 2011

Low Calcium...

So Zach has been "symptomatic" over the past few days.  Today after school he did not look well and by 6pm we knew we had to take him into Emergency.  We suspected that he has low calcium....and it is.  Four points below the low normal range.  So as usual, lots of Doctor head scratching.  The Doc in emerge said he would call the endocrinologist on call.  I laughed and said, "he will send us home".  Much to the disbelief of the emerge doc....I was right! LOL!  So, we are home.  We will go back in tomorrow to see our Pediatrician.  Zach also has that pre-op appointment as well.  Zach is in bed, oxygen on and sound asleep. Nothing like 4 and a half hours in emerge to exhaust an already exhausted kid.  I sound tired and grumpy.  sorry....nighty night. Luv T

Monday, 25 April 2011

One week till testing.....

On May the 2nd, Zach will be sedated  and admitted into the Stollery to have a bunch of tests done.  There are 2 departments involved in the testing.  Pulmonology (Respiratory) and G.I. (Gastro Intestinal).  The Tests are:

Bronchoscopy   A technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. An instrument (bronchoscope) is inserted into the airways, usually through the nose or mouth. This allows the doctor to examine the patient's airways for abnormalities such as foreign bodies, bleeding, tumors, or inflammation. Specimens may be taken from inside the lungs.

Gastroenterology  In medicine (gastroenterology), esophagogastroduodenoscopy is a diagnostic endoscopic procedure that visualizes the upper part of the gastrointestinal tract up to the duodenum. It is considered a minimally invasive procedure since it does not require an incision into one of the major body cavities and does not require any significant recovery after the procedure (unless sedation or anesthesia has been used).

Colonoscopy  Colonoscopy is the endoscopic examination of the colon and the distal part of the small bowel with a CCD camera or a fiber optic camera on a flexible tube passed through the anus. It may provide a visual diagnosis (e.g. ulceration, polyps) and grants the opportunity for biopsy or removal of suspected lesions.

PH Probe  Esophageal pH (pH is a measure of the acidity or alkalinity of a solution) monitoring is a procedure for measuring the reflux (regurgitation or backwash) of acid from the stomach into the esophagus that occurs in gastroesophageal reflux disease (GERD).  Esophageal pH monitoring is used to diagnose GERD effects, to determine the effectiveness of medications that are given to prevent acid reflux, and to determine if episodes of acidic reflux are causing episodes of chest pain. Monitoring esophageal pH also can be used to determine if acid is reaching the pharynx (lower throat) and is possibly responsible for such symptoms as cough, hoarseness, and sore throat.

For the first 3 tests and the insertion of the PH probe Zach will be asleep.  The PH probe will be in for 24 to 48 hours.  He will be awake for the remainder of that test and we shall stay in hospital.  Many of you are probably asking  yourself, "why does he have to have this done".  Let me explain....

Zach has had severe reflux all his life.  He has been on adult doses of antacid since he was 5 months old.  Not only does he reflux, but he also regurgitates.  Kinda like a cow chewing her cud, however our bodies are not supposed to do that.  Long term effects of GERD can really hurt your food tube and can cause cancer.  So it needs to be checked.
 Also, Zach is not sleeping.  The sleep study in November showed that he moves 17 times an hour.  They have increased his iron and put him on oxygen to try to fix hasn't really helped.  They believe his restless sleep (PLMD) is do to the regurgitation problem.  The ph probe test will determine if their suspicions are right.

Zach has always had bowel problems, however they have increased over the past 10 months.  We actually think Zach has lost the motility of his bowels.  This is the reason for the colonoscopy as well as the biopsy's they will be taking.

HOWS ZACH?  He is excited about going to sleep and getting to stay in the hospital.  They have an X box there and he can't wait to play it!  LOL!

HOWS MOM AND DAD?  Well, not as excited as Zach.  Zach doesn't typically handle sedation well.  Lots of throwing up......not fun  We have a pre-op appointment on Thursday (April 28th) so we are hoping they will have a better game plan then we've had in the past.  It will not be good if he throws up the PH probe...we need the data it collects.

Thank you for continuing to pray for Zach.  We are so grateful to have the love and concern from so many.  Pray that the testing goes well.  That we will get the information we need so that we can provide Zach with the best quality of care.  Love T and P

Friday, 22 April 2011

Parathyroid glands

Parathyroid glands

Illustration showing parathyroid glands

June 1st 2011 International Hypoparathyroidism Day

World Hypoparathyroidism Awareness Day

06/01/11 12:00 AM
06/02/11 12:00 AM
The 1st Annual World Hypoparathyroidism Awareness Day will be celebrated on June 1, 2011. This day is a time for all those affected by hypoparathyroidism can come together to raise awareness of this rare medical disorder.

Tuesday, 19 April 2011

Sleep Study at the Stollery in November 2010

"Sure, tape whatever you want to my face...Kent brought me a Yoda bobble head."


Many people are thinking and praying for Zach.  Some have wanted to know what his current diagnosis is.  I will try to address that in this post.
Zach has had medical and developmental hurdles since the day he was born.  This is a list of his current medical diagnosis.

1.Idiopathic (non-surgical) hypoparathyroidism (HPTH) is a rare endocrine condition that affects the    levels of parathyroid hormone, causing low calcium in the blood
2.Familial Dysautonomia  A genetic disorder that affects the development and survival of certain nerve cells.  The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, production of tears and the regulation of blood pressure and body temperature.  It also affects the sensory nervous system, which controls activities related to the senses, such as taste and the perception of pain, heat and cold.
3.Kidney stones (bi-latterly)
4.GERD (Gastro-intestinal reflux disease) Backward flow of the gastric contents into the esophagus resulting from improper functioning of the sphincter at the lower end of the esophagus.
5.PLMD (periodic limb movement disorder) Periodic limb movement disorder involves repetitive episodes of muscle movements that usually occur in the legs. The movements are described as a jerking motion or an upward flexing of the feet.  In a sleep study done on Zach in November 2010,  Zach moves 17 times per hour and the movements involve his entire body.  He also had an average of 13 central apnea's per hour.
6.Hypo tonic (low tone)
7.Organic brain damage This encompasses all of Zachary's learning disabilities.  Numbers, letters, reading and writing are hard work for him, but he is doing it!  With the help of his teacher, we adjust his program so that he continues to be challenged but not frustrated.  How Zach often feels "medically" dictates just what he is able to accomplish academically.

We were asked to make a list of all the "symptoms" that coincide with his list of Diagnosis, there are 47 items on the list.  You see, each diagnosis has its on batch of symptoms that greatly effect Zach's quality of life and his ability to function day to day.

As always, we are so grateful for those who show concern for Zach and our family.  We appreciate your prayers, thoughts and concerns more than words can express.  God Bless!

Monday, 18 April 2011

Zach Loves Kimbal Lake   Summer 2010

Where to begin?

In March of 2010, our son Zach was diagnosed with something new.  New meaning, something else to add on to the impressive list of medical and developmental items he is currently dealing with.  For the past year I have spent countless hours searching on line hoping to find another child with medical conditions similar to Zach.  And hoping that maybe somewhere out there,..... a family is searching for us too.

Many of our friends and family have shown such genuine concern for us.  We know many of you are praying and thinking of us. So we are starting this blog to keep you up to date as well. Thank you for loving us and know that we love you, we thank our gracious God for giving us friends like you!

 Zach has a rare condition called Idiopathic (non-surgical) hypoparathyroidism.  It is a condition in which your body secretes abnormally low levels of parathyroid hormone.  This hormone plays a key role in regulating and maintaining a balance of your body's levels of two minerals - Calcium and Phosphorus.

The low production of parathyroid hormone in hypoparathyroidism leads to abnormally low calcium levels in your blood and bones and to an increased amount of phosphorus.  The symptoms that accompany hypoparathyroidism are:  tingling, burning in your fingertips, toes and lips.  Muscle aches or cramps affecting your legs, feet, abdomen or face.  Twitching or spasms of your muscles around your mouth, hands, arms and throat.  Fatigue, anxiety or nervousness.  Headaches, depression, mood swings, memory problems. We see all of these symptoms in Zach, however some days are less symptomatic which is a great day!

Well, I'm new to this bloggy world so I think I'm gonna stop for tonight.  God Bless!  Love Tanis

ps. Yes Jessica it is actually me typing this....I figured it out!!!! cyberspace watchout!