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



Tuesday 31 May 2011

Thank God for Friends

Hi!  So we go to Maryland tomorrow.  I can't believe it.  This seemed  impossible to us....but not for God.  We are so grateful for your prayers and your support during this tough time.  Your kind words, the emails, letters, phone calls and gifts have blessed us more than you will ever know.   
Thank you and God Bless you

From Birth to Hypoparathyroidism

Zachary Isaac Klassen
 Zach was born on August 21, 2002 at Royal University Hospital in Saskatoon, Saskatchewan, Canada.  He is the second oldest of our four children.  Jacob (10)  Zachary (8)  Olivia (6) and David (4).  Zach was born at 34 weeks and weighed 5lb 11oz.  Within minutes of being born Zach started to make a drowning kind of cry.  He was grey in color and was taken to the NICU.  When we finally got to see him he didn’t look well and his chest was really heaving. 
At 5 hours old Zach coded and was put on a ventilator.  We were told he had no surfactin in his lungs.  He was given synthetic surfactin and then they tried to drop the amount of oxygen thru the ventilator, he coded again.  Over the next day or so they gave him a second round of surfactin.  They began to make attempts to take him off the ventilator.  He was on oxygen and then on room air. 
I began to try and nurse him.  He had a difficult time and would turn blue around his lips.  We were sent home and told to “watch” him.  We took Zach home when he was about 8 days old.
At home Zach continued to struggle with feeds.  He slept a lot and was very docile.  He continued to gain weight and we just thought we had a dream baby who loved to sleep.
On November 5, 2002 at 6am, I came into Zach’s room.  He was blue, his lips were very dark and he was completely lifeless.  Our neighbours performed CPR on him until the ambulance came. After about 8 minutes of CPR and suctioning him, he lazily opened his eyes and looked around.  He was very pale and weak.  We went to the Royal University Hospital by ambulance.  While in emerge he began to perk up...it was weird. 
We were admitted and that night they did an apnea tracing on him.  In 8 hours he desaturated 80+ times and dipped into the 60’s.  There were no obstructions.
 It was like flicking a light switch on and off.  Even the alarms and frantic nurses didn’t wake him.  We were told he had a brain tumour.  It took 1 week to do a CAT scan to confirm the tumour.  We were heartbroken and braced for the worst.  After the scan they told us there was no tumour and they decided to put him on anti seizure meds.  He had mild spikes in his EEG.  They thought the seizures were causing the apnea.  After a week of trying this, he still had severe desaturations when he slept.
The Doctors fought about what was wrong, who was right and who was in charge of his care.  We were scared and knew that we needed to take Zach to a children’s hospital. They took him off of the anti seizure med and put him on caffeine. 
We were told that he was “acting” like a baby born at 27 weeks (remember he is 2.5 months old now) and that he would “grow out of it”.
We moved our family to Edmonton, Alberta, Canada in mid January of 2003.  Upon arriving at The Stollery Children’s Hospital the doctors here also thought he had a brain tumour or a Kiari malformation.  They did an MRI to rule it out.  We stayed in hospital and they weaned Zach off the caffeine (it was awful).  They also started testing him for many different things.
They did a full sleep study and Zach continued to have the central apneas.  This bothered them because there seemed to be nothing wrong with him brain.  So they decided to do a laryngeal and bronchoscopy on him.  His pulmonologist came roaring out of the O.R.  He couldn’t get the camera down his airway!
Back to the MRI.  Zach had 2 compressions on his airway.  His artery taking blood to his right arm was “pulling” his airway over and then it ran alongside his spine and his left bronc tube was compressed by his spine.  All these compressions....no obstructive apnea.
They did a swallow study on him which he failed in flying colors.  They were baffled because he didn’t have “failure to thrive”.  We thickened his feeds.  They did a PH probe on him and determined he had GERD.  He was put on antacid.

They did not operate on the compressions.  We put him on oxygen whenever he slept or whenever he got sick (which was often).  This stopped the apneas.
We were in and out of The Stollery from the time we got here in 2003 till 2005.  Then he seemed to rally.  He had lots of developmental issues but the medical concerns kind of took a back seat.
In the summer of 2007 we began to notice Zach’s energy level was not great (not that it had ever been “normal”).  He would almost pass out.  We held him back from kindergarten as he still slept in the afternoons and his speech was so delayed. He was always behind on his developmental milestones. 
We did lots of early education programs.  Everyone loved Zach!  He was calm and sweet and loved to snuggle.  He could sleep anywhere!
School started and Zach’s developmental issues came to centre stage.  Nothing came easy for Zachy.  School work, friends, fatigue and the endless twitching.   His anxiety would get higher and it was so hard to calm him down. 
He would jerk and twitch. Get angry and cry the saddest cry you could imagine.  He was changing.  No longer our calm and docile Zachy.  I took him back again and again to our Paediatrician.  He told me it was Brain Damage from all the trauma when he was small.  This went on until the fall of 2009 when he finally referred us to a developmental Physiologist.  Zach needed help in school.  His anxiety and extreme exhaustion were creating so many learning problems.
By December of 2009 I thought I was losing my mind.  Our boy was sick.  Something was wrong and nobody was listening to me.  On New Year’s Eve, Zach (along with a bunch of other relatives) caught terrible stomach flu.  We thought this was going to do him in.  He lost 10 pounds.  In the weeks following this flu I made several trip to our Paediatrician.  He assured me it was all in Zach’s mind.  That it was a really bad flu and that everything from the fatigue to his severe abdominal pain and the twitching and shaking was a result of the Organic Brain Damage.
Zach was so sick.  We pulled him out of school in February (2010) and our Developmental Physiologist (a wonderful man) placed him a special program at the Glenrose Hospital in Edmonton.  There are only 7 kids per class and 7 staff.  After 2 weeks of being in that program, Zach’s doctor told us that he and the staff could see that Zach did have some developmental delays; however they were very concerned that something was “medically” wrong with Zachary.  They agreed with our concerns and that gave me the confidence to confront his medical doctors.
On March 18, 2010 after 2 years of this downward spiral Zach was on, I packed him up in the morning and took him back to The Stollery.  Not to our Paediatrician in the clinic but into emerge.  I had decided I was not going to leave that hospital until they found out what was wrong and if they couldn’t find ANYTHING wrong with Zach, they would have to admit me because I was losing my mind.
They did the typical electro light work up and said everything was “within a normal range”.  I would not back down, so they ran some more tests.  The whole time Zach is twitching and jerking.  He is pale and unhealthy looking.  All they did was look at the test results...not at him.  After 8 hours in emerge, they sent a Doctor in to try and discharge us.  I told him to “look” at Zach.  Finally this Doctor listened.  He looked past me and went to Zach and tried to talk to him.  Zach was distant, in a fog.  (It’s like he can hear us but has no ability to respond).
The Doctor left the room and came back about 10 minutes later.  He said he wanted to “test” his Calcium.
They drew Zach’s blood and 45 minutes later he walked back into the room...the Doctors eyes were propped open!  He told me Zach’s Calcium was at 1.8 (range 2.2  -  2.7)  I said “is that bad?”  He walked passed me, went up to Zach and gently tapped his head close to his temples.  Zach’s face contorted and spasmed....it was crazy and scary. 
All of Zach’s life we had been looking for a brain tumour or something in his nervous system or a gastrointestinal problem.  They had checked him for several Genetic disorders all to no avail.  I was well read on these subjects...but not endocrine diseases.
I asked the doctor “what do we do?”  He said, “I don’t know”.
Over the next year we were in and out of the Hospital. We have struggled with getting the Doctors here to research and help him.   Zach’s calcium waxes and wanes and he is very symptomatic even when in a “normal” range. 
That is the condensed version of how Zach got from birth to Idiopathic Hypoparathyroidism.  His life has been a rollercoaster of suffering and unanswered questions.  We know that Zach’s health problems are chronic.  Our desire is to give him the best quality of care.  To give him the opportunity to live a life free from symptoms as much as possible.  He is a beautiful, compassionate boy whose greatest desire is to be accepted and understood.
Sincerely, Perry and Tanis Klassen
Spruce Grove, Alberta Canada

Sunday 29 May 2011

Update

Hi!  Zach has been having a lot of abdominal issues since Thursday.  He has been in pain.  Dealing with his tummy stuff is hard.  Basically because its hard to tell just "what" is causing the problem.  Kidney stones? The loss of motility of his bowels?  GERD?  So we've had some intense moments since Thursday.  Thank you for continuing to pray for him...he needs it. Nighty night. T

Saturday 28 May 2011

The Zach Pack!

To The staff at Anixter,                                                  
You have started something.  Your generosity has spurred on a chain of events that leave Perry and I speechless.  We cannot believe this is happening.  Thank you for the compassion and help you are showing to Zach and to us. 
This past week when one of our kids asked why everyone is helping us, before I could answer Zach came into the room and said in a loud voice “so I can see the best Doctor’s in the world!!!!”  Perry and I laughed so hard.  So much of life he doesn’t fully grasp, but this he gets.  People care about him.
            Thank you for giving.  This is new territory for us and accepting this kind of help is really hard to do.....humbling.  Thank you  XO
Lana with Jake, David and Olivia
Anixter Rocks!

Friday 27 May 2011

Letter from Jessica and Ashley

Hi there, I am Jessica I am sending you a email because you are someone special to Tanis and Perry and their family.  As you may already know it is myself and my sister in law Ashley that have put together the fundraiser event for Zach on July 1st. 
 I wanted to send you a official invitation, even though one is not needed.  Anyone is welcome to come.  It is our hope that everyone will be able to attend and we will raise more money than even needed to get Zach the medical attention from the Doctors in the United States.  We want to get all the families together and have a great evening of family fun. 
We are selling tickets for $25 a person, kids free. We hope to sell all 250 tickets so please forward this on to anyone you know that you feel may want to attend.  This isn't just for people that already know this amazing family, we want to meet new people and share their story. 
 If you want tickets please Check out the EVENTS PAGE on face book  "All For Him" .  Thanks again for your love and support!  We look forward to seeing all of you at the July 1st celebration!
Jessica & Ashley

Thursday 26 May 2011

Blessed......

Dear friends and family,                                                                 May 24, 2011

We have something to tell you.  Something we are still having trouble grasping.....

 Last fall, we enrolled Jake, Zach and Olivia into Living Waters.  It is a private Christian School here in Spruce Grove.  It has been amazing!  Our children are surrounded by not only a dedicated, caring staff but also by wonderful, compassionate families. 

During the course of the year it has been exciting to watch our kids getting to make new friends.  This has always been a fairly easy task for Jake, Olivia and David....but not always for Zach.  Friends have been hard for him for several reasons, the main one being that he often misses school because of illness, doctor appointments, tests or hospital stays.  While everyone is "learning" and "socializing"... he is in the lab getting his blood taken.  In 2010, we travelled 11,300 km taking Zach to and from appointments. However, this school year has been a bit different...

Within the first few weeks of school we could see that this group of grade one’s was different. 
(Like Zach says, “I have been stranded in Grade one forever!”)  These kids were genuinely concerned about Zach.  They would ask "Does Zach have to go to the doctor today?”  "Does Zach have to get blood done today?"  "Why is he so sleepy?"  "Is Zach going to be at school tomorrow?" It was so sweet, they really cared for Zach and for the first time since Zach had started attending school, we felt that he was safe.   

Caleb, Zach and Jacob

At home, we began to hear a lot about "Caleb S." and "Jacob C.".  If Zach missed school and the boys saw me, they would come and ask me if Zach was ok.  In January, when Zach had a Hypercalcemic crisis, we had to call an ambulance to the school.  His class huddled in the corner while I tried to get Zach to wake up.  I remember looking up and seeing their concerned faces, and then I realized that Caleb was not more than 5 feet from us.  He looked straight at me and asked me if Zach was going to be ok?  His genuine concern for Zach was evident.

Caleb and Jacob are cousins.  Their moms, Ashley (Caleb’s mom) and Jessica (Jacob’s mom) are sister’s in-law.  We now know that a LOT of their cousins attend LWCA (LOL!)  We began to really get to know each other this spring.  They are busy, energetic women and each have 3 kids.  On Monday May the 9th, I dropped Jake, Zach and Olivia off at school and in the parking lot I bumped into Jessica.  She asked about Zach and within minutes was sharing her story with me.

Her husband, Derek, died at the age of 32 from ALS (Lou Gehrig’s disease).  This is a devastating disease.  She shared with me how some people would ask if she needed any help and she would say ”no” and how others didn’t ask....they just did.  She told me how herself, Ashley and their families had been thinking and praying for Zach.  They knew grief and wanted us to know how concerned they were for him.  I got into my truck, called Perry, crying my eyes out and told him her story.  She had to care for her dying husband and raise their 3 children. The enormous blessing of God’s grace in her life astounded me.   About 40 minutes latter I got a call from Ashley.  She said a lot of stuff that just spun around my head...but one phrase in particular stuck “WE KNOW WHAT TO DO!!!  WE KNOW WHAT TO DO!!!”

On July 1st 2011 

At Sandhills Community Hall
they are putting on a fundraiser to help us with the cost
of taking Zach to the U.S.  to see the doctor’s
who are most familiar with Zach’s rare condition.

Idiopathic Hypoparathyroidism


“Wow” is pretty much what Perry and I say to one another.  We are truly humbled by their generosity.  We have always pushed for Zach to receive the best care...and as Ashley and Jessica have said too us, “now you can keep on pushing”.
So many people from different areas of our life have blessed us and extended God’s grace to us.  Our Church, our school, Perry’s work and of course our family and friends.  We are truly thankful for everything you’ve done to help us.
God’s care for us, His attention to every detail of our lives is amazing.  When we reach the end of all we can do, that’s when we realize that we can do nothing.  God alone is Sovereign and in control of all things.  The trials we face on this earth are to bring us to our knees so that our lives can do one thing...give Glory to God!   All For Him!
Love,
Perry and Tanis
Jacob, Zachary, Olivia and David

Wednesday 25 May 2011

Calcium Levels

Hi! So We were at the Stollery yesterday for appointments and then had to go back this morning to do labs.  Zach had to have nothing by mouth since super last night (14 hours).  They took 6 viles of blood and did a urinalysis.  They called at 4pm and  his calcium has gone up.  They do 3 types of calcium levels, however only 2 are really significant.  Ionized Calcium (range is 1.00 - 1.24). PTH adjusted (range 1.09 - 1.25).  So we need to keep Zach's calcium at the low end of these ranges to prevent kidney damage.  Whats amazing to me is that a healthy persons calcium "stays" within this tiny window!  Zach's however do not, he waxes and wanes.  His levels today are:
Ionized Calcium   1.27
PTH adjusted Calcium   1.23
So one of the hard things about this disorder is that there is no home test.  Jake says he is going to invent one so that Zach won't have to always go into the Stollery to get his blood checked. 
We have some exciting news that I will post tomorrow!  Night night  xo

Monday 23 May 2011

Marvelous May Long Weekend

We have had a very fun weekend! Uncle Mike and Auntie Danielle came to see us and gave us a great gift! They took our family (yes, all six of us) to the West Edmonton Mall Water Park!  We had a awesome time.  It was like being on a mini vacation!  Zach did really well, he enjoyed being in a tube in the wave pool and "riding" the waves as Uncle Mike held onto him.  Thank you so much, we  love you guys!  xoxoxoxo

Thursday 19 May 2011

Countdown to Conference!

We are truly overwhelmed by the generosity of all of you who are concerned and praying for Zach and our family.  Some amazing things are happening!  I put this together this past week to try and more accuratly explain Zach's current status.  Have a great day!

Yesterday was David's 4th Birthday

Zachary Isaac Klassen medical diagnosis

1.     Idiopathic Hypoparathyroidism
Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.
Hypoparathyroidism is the combination of symptoms due to inadequate parathyroid hormone production.  This is a very rare condition. 
Hypoparathyroidism is the state of decreased secretion or activity of parathyroid hormone (PTH).  This leads to decreased blood levels of calcium and increased levels of blood phosphorus.
Calcium affects every cell in the body. Most people usually think about teeth and nails in connection with calcium but in fact its effects are on the whole body. Low and high calcium levels produce a spectrum of physical, emotional and neurological symptoms.  Zach’s calcium levels are very unstable.  An extreme level, either high or low can be very scary for him.
Symptoms can range from quite mild to more severe. From painful muscle cramps to seizures, comma and heart failure. These are some of the symptoms that Zach deals with on a daily basis.  Tingling, muscle spasms, facial pain, muscle cramps and rigidity, weakened tooth enamel, abdominal pain, leg pain, burning sensation, hand and feet numbness and pain, hard to awaken, fatigue, weakness, anxiety, throat spasms, nervousness, headaches, depression, mood swings and memory problems.  Zach also has several kidney stones in both kidneys.
All endocrine disorders have a synthetic replacement (i.e. Diabetes/insulin).  The hormone replacement for Hypopara is being studied thru clinical trials in the U.S.  It is called PTH 1-34.
In the mean time, the therapy for Hypopara is a drug called Rocaltrol. Rocaltrol (calcitriol) is a synthetic vitamin D analog which is active in the regulation of the absorption of calcium from the gastrointestinal tract.  
  • For whatever reason (they do not know why) Zach’s Calcium levels will not stabilize.  He waxes and wanes.  He is also extremely symptomatic on this medication.  Zach’s been on this medication for one year and is already experiencing the “late occurring “side effects.  The bold marked symptoms are the ones he is already having.
  • Side effects occurring early may include:
    Bone pain, constipation, dry mouth, extreme sleepiness, headache, loss of appetite, metallic taste, muscle pain, nausea, vomiting, weakness

·         Side effects occurring later may include:
Abnormal thirst, apathy, arrested growth, dehydration, elevated blood cholesterol levels, excessive urination, extremely high body temperature, high blood pressure, inflamed eyes, intolerance to light, irregular heartbeat, itchy skin, kidney problems, loss of appetite, night time urination, runny nose, sensory disturbances, urinary tract infections, wasting of muscles or other tissues, weight loss, yellowish skin
 Zach has several other diagnoses.
2.     Gastro Intestinal Reflux Disease
Gastroesophageal reflux disease, commonly referred to as GERD or acid reflux, is a condition in which the liquid content of the stomach regurgitates (backs up or refluxes) into the esophagus.

3.      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 can create problems with speech, movement, swallowing and G.I. motility.   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.  

Zach’s body does not refer the messages to his brain properly.  An example of this is his difficulty telling the difference between something that’s cold or something that is wet.  He never tells us he is hungry and has to be reminded that he “has” to eat. Zach’s body is in constant pain.   However, because his nerves do not send the messages to his brain properly, he doesn’t even really understand what pain is or how it affects him.

4.      Periodic Limb Movement Disorder 
Periodic limb movement disorder is a sleep disorder characterized by rhythmic movements of the limbs during sleep. The movements typically involve the legs, but upper extremity movements may also occur. Movements occur periodically throughout the night and can fluctuate in severity from one night to the next. They tend to cluster in episodes that last anywhere from a few minutes to several hours.  This disturbance in sleep causes excessive daytime sleepiness.  Zach is on oxygen at night to try and help him rest easier.

5.       Organic Brain Damage
At birth, Zach had hypoxia to the brain.  He stopped breathing and had to be intabated.  This        (along with several other factors)  have limited his capability to do many things.  He is bright and has a good sense of humor. However sarcasm is not something he understands.  He is very literal.  If something is “a piece of cake”....he thinks desert is on its way!

What does all this mean for Zach?
*       Zach is a tough little boy.  He has been sick all his life and has just taken it in stride.  Recently he has begun to realize that he is sick.  That not everyone has to go to the lab and get their blood taken a couple times a week or sit through endless appointments and be poked and prodded.  He gets upset because he has to miss stuff or plans change.  Sometimes the hardest part is that he knows he is sick and just can’t keep up with everyone else.  It makes him very sad.
*      
*       We make every effort to always be positive with him.  We explain to him that our world is not perfect and neither are our bodies.  That God has a plan for him and he has already helped so many people.  Zach has been able to show other kids at the lab how easy it is to take blood and holds their hands and tells them” it’s ok” when they are crying.  He is a compassionate boy who desires to be accepted and understood. 
*      
*       What does this mean for our family?
*       For many years now Perry, myself and our families have carried the weight of this burden both emotionally and financially.  At first you think, he will get better, this hard time will pass.  Then after a couple years you become angry and resentful because you see other families with healthy kids getting on with life. Doing things your family cannot do.  Then eventually you realize that we have no control over the circumstances in life that come our way.  That the only thing you can control in a crisis is your conduct.
*      
*       Zach will often say things like, “I will be glad when I get to Heaven cuz then my tummy won’t hurt any more”.   This cuts me to the core.  Or watching the faces of Jake, Olivia and David as they watch Zach as he has a calcium low or an abdominal attack.  Their brother curling up and crying in pain....their scared faces.  How to answer Jake (10 years old) asking if his brother is going to die.  Telling him that everyone dies and that no matter what happens God is in control and we need to trust Him and thank Him for the grace and strength to deal with whatever comes our way. 

The next step
Perry and I are attending the Hypoparathyroidism Conference in Rockville, Maryland June 2, 3 and 4th.  The leading Doctors and researchers in this condition will be there. We are hoping to gain more knowledge on this condition.

We know that Zach is a chronically sick child.  Our goal is to look into other treatments to ease the symptoms he has and to provide him with the best quality of care we can.   The Doctors here have not been able to determine “why” Zach has these disorders. Is it Genetic or Autoimmune?   They have exhausted all the genetic testing available here.  After many hours of reading, we think Zach has a mutation in his calcium receptor gene or and auto immune disorder called APS type 1.  These questions (along with pages of other questions) are what we hope to find some answers to when we attend this conference.

Wednesday 18 May 2011

Sharing...

Sorry for delay in updating.  Seeing that we make our children "share" EVERYTHING.....strep is no exception.  All 6 of us have strep.  LOL!  Zach and Olivia are tied for 1st place with 5 positive strep swabs since October 2010.  Davey is close, in 3rd place with 4 positive swabs since Janary 2011.  Jake is in 4th place with 3 poitive swabs.  Perry and I are tired... oh sorry...   "tied" at 2 each. Hahahahah!  It's sorta like keeping score of hockey !  LOL!

Tuesday 10 May 2011

Strep again....

We were at the Stollery today to do labs and see the Peadiatrician.  There are no results back yet from the tests last week.  Before we went home last Tuesday night, the doctor swabbed Zach and Jake, as Zach was running a fever all day and the blood and urine cultures didn't show anything.   Yup......strep again.  This will be the 4th time in the last 5 months that Zach has had strep.  I find this funny because in 2007, they took out Zach and Jake's toncils and adnoids (one right after the other in the OR...LOL!).  This was done because the 2 of them passed strep back and forth for 2 years. They figured that surgery would elliminate this problem....it didn't work.

We have had some other amazing things happen in the past few days....we will keep you posted.

You have never really lived until you've done something for somebody who can never repay you.


Love Tanis and Perry

Sunday 8 May 2011

My Mom's Reminder

My Mom sent me this early this morning.  Over the past several years our family has experienced both burdens and generosity.  Both are humbling.  Thanks Mom, for reminding me that I have my limits but God does not.  His grace, mercy, love, peace and resources far exceed my ability to comprehend.  Thankyou xoxo
 
He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase;
to added infliction He addeth His mercy,
To multiplied trials, His multiplied peace.
 
When we have exhausted our store of endurance,
when our strength has failed ere the day is half done.
When we reach the end of our hoarded resources,
Our Father's full giving has only begun.
 
His love has no limit, His grace has no measure,
His power has no boundary known unto men.
For out of His infinite riches in Jesus,
He giveth, and giveth, and giveth again.
 
May God Bless all of you who have given so generously.
 

Thursday 5 May 2011

Big Brother Jake

"He's not heavy.....he's my brother." 
16 months apart to the day, they aren't just brother's, they're best friends.

Generosity.....

Generosity is the habit of giving freely without expecting anything in return. It can involve offering time, assets or talents to aid someone in need. Often equated with charity as a virtue, generosity is widely accepted in society as a desirable trait.

We are pretty speechless. So about three weeks ago we decided that I needed to attend the Hypoparathyroidism Conference in Rockyville, Maryland.  It is the 5th annual Hypoparathyroidism conference.  Several of the American Doctors that we've been in contact with are speaking at the event.  Within a week of us deciding to go, several  amazing things happened. First, Perry and I were provided with flights!  We both get to go....amazing.  We are so thankful for this blessing.

Then last week, the staff at Anixter, where Perry works, has started fundraising to help cover the cost of our trip.  They've made posters and are doing 50/50 draws on Friday's and collecting bottles.  These are busy people and for them to take the time to do this is a sacrifice.  We are extremely humbled by their generosity.
Thank you.

The Conference is June 2nd, 3rd and 4th.
http://www.hpth.org/

Wednesday 4 May 2011

Friends come to visit....

"My friends, baby Caleb and Isaac came to cheer me up."

Long day.......

"Mom won't let me play with the latex gloves.....but as soon as she leaves the room, my nurses give me whatever I want."
Stollery   Monday night May 2, 2011

Home from the hospital

Well everything went reasonably well.  It will take a while for them to get all the biopsy's back.  His airway and lungs looked great as did his esophagus.  No signs of reflux damage which means that the meds he is on for GERD are doing their job.  He came out of the anesthetic much better than he has in the past.  He was not impressed with the ph probe down his nose but he did really well.  We left the Stollery last night at around 8:30pm.  Zach has been running a fever and having lots of abdominal pain.  His white blood cells are elevated.  They did blood and urine cultures but everything came back fine. He is very tired.  He has "spurts" of energy and then he just collapses.  We go back in Friday to do Labs and see Doc's. 

Thank you once again to all of you who are praying and concerned for Zach.  We are very grateful for our amazing support system...you guys are awesome!  Love P and T