Zachary was born 5 weeks premature and weighed in at 5lbs 13oz, 20.5 inches. He arrived after an enjoyable and uneventful pregnancy. Initially, he was kept in the Special Care Nursery due to jaundice, poor weight gain and reflux.
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Zachary Loves the Camera
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Finally, after 10 days, we were able to go home with our baby boy.
As first time parents everything appeared to be normal, although we were obsessed with Zachary's feedings. He fed very slowly and the weight gain was also very slow. This was the beginning of us charting every ounce he took in, every ounce he brought up and every ounce he gained, for the next 18 months.
At our 3 month routine check up our pediatrician noted that she had some concerns with Zachary's development. He was not fixing and following objects and had poor neck control.
She immediately made a referral to a pediatric opthamologist and suggested that we should schedule
a CT scan to determine any neurological issues.
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Zachary smiling
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Three days before Zachary's first Christmas the opthamologist declared that there was indeed a problem with Zachary's vision and that he was blind and would never be able to see. He went on to say that nothing could be done to reverse or correct the problem. Talk about bad beside manner. We walked out of the office in complete shock. We were devastated, but with the support of our parents and family we made it through the first of many crises we would endure. The day after Zachary was baptized, he had a CT scan that showed some atrophy of the cerebellum. We still had no conclusive results but were told that the cerebellum was the part of the brain that controlled fine and gross motor skills and that the atrophy would mean the skills would certainly be affected.
We were then referred to the Hospital for Sick Children in Toronto.
At the tender age of 5 months Zachary's intimate, and often painful relationship with this amazing institution began. The first doctor to see Zachary was the Neurologist who did an MRI, which was not able to provide any conclusive evidence to explain Zachary's symptoms.
Next we began to see the GI Nutrition team since Zachary was still not gaining weight and continued to have reflux issues. Upper GI Xrays were done, feeding assessments, multiple rounds of blood work and reflux meds were started, anything to determine the problem and to avoid a G tube.
Through all this the Eye specialists at Sick Kids were also seeing Zachary and continued to perform various tests for his vision. (At 2 1/2 strabismus surgery was performed.)
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Zachary
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The next doctor was the Genetic Metabolic Specialist, who ran a series of bloodwork in addition to the numerous vials that had already been taken. Our poor Zachary had been poked so many times in his short life and tolerated it all with his beautiful smile. Finally, after months of investigation, in August of 2002 the Genetic Metabolic Specialist informed us that our Zachary had been diagnosed with an extremely rare disease called CDG. This disease was so rare that Zachary was the first child to be diagnosed at the Hospital for Sick Children, a world-renowned institution.
Another devastating blow for us. We had been anxious to get a diagnosis but neither of us was prepared for such news. Even though we knew Zachary faced some serious challenges in his life, finally receiving that diagnosis brought home the magnitude of Zachary's problems. He had a disease to which there was no cure, and the life expectancy of children with this disease was unknown. It was a devastating and difficult time as we struggled to come to grips with this heartbreaking news. We fought back our tears and attempted to be strong for the brave little boy who grinned through every procedure he had endured in his short little life. Yet again, with the support and love our families we were able to pick ourselves up and be strong for our boy, who had been so strong for us.
Zachary had a skin biopsy performed one week before his first birthday and it took about 6 months to get the results of his mutation.
Zachary remained relatively healthy for the first year of his life. The second year brought us many challenges that would test our limits emotionally as well as spiritually.
At 13 months, Zachary had his first seizure, which resulted in Zachary's first ambulance ride to the hospital. He bounced back quickly and was home the next day with doctors suspecting it to be a febral seizure. At 16 months, Zachary contracted the flu and was hospitalized for severe dehydration and had to stay in the hospital for 6 days before being healthy enough to go home.
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Zachary
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At 19 months, we could not get Zachary to gain the weight he needed and conceded that he needed to have a Gtube put in. After what was supposed to be a routine day procedure, Zachary developed peritonitis and became quite ill. Zachary became more and more lethargic and spent most of his time sleeping or crying which broke our hearts. He endured numerous tests and rounds of antibiotics fighting this infection but just seemed to be declining as the days wore on. Miraculously, Zachary turned the corner and quickly recovered. After 30 days, he was sent home healthy.
Zachary had now been hospitalized for 37 days during his second year on earth. Throughout Zachary's second year, he suffered from constant recurring ear infections, which he found terribly painful along with unexplained bouts of irritability. Throughout the fall we noticed Zachary's belly getting bigger and felt relief that he was finally gaining weight. Little did we realize at the time that Zachary's most frightening battle with this disease would soon begin.
In early December, Zachary's belly began to show signs that he was not gaining weight. Veins were showing and he appeared to be in pain for most of the day. A call to Sick kids was made and arrangements were made to bring him in for observation. Zachary was quickly diagnosed with ascites, an abnormal accumulation of fluid in the abdomen. We soon learned that children under two with CDG had a high fatality rate when suffering from ascites as it meant another serious underlying condition was causing the fluid buildup. Zachary's girth grew almost 1.5 centimeters a day and he became unresponsive soon after admission as his body began shutting down. He was fighting so hard but seemed to be losing the battle. At about week two with his girth continuing to grow, he contracted viral meningitis.
Zachary was placed on a 14 day antibiotic treatment to fight this serious infection and hearing tests were conducted to determine the level of hearing impairment he would face as this meningitis often caused hearing loss. At this point, we felt complete and utter despair. Zachary was not improving, doctors could do nothing but offer their condolences when they came into the room and he was now going to have an impairment to his one sense that wasn't affected by this disease. Zachary was being treated with lasics, TPN and albumin transfusions.
Zachary's condition soon became grave and radical options were discussed in treating this condition as doctors could not find the underlying cause to Zachary's ascites.
But on Christmas day, God gave us the best Christmas present we had ever received. Our son! His condiion miraculously began to improve and he began to lose his girth over the next few days. Our faith was re-affirmed as we struggled to understand God's plan for us and for our son.
Zachary came home on New Year's eve and spent the next month recovering from this battle that nearly claimed his precious life. Within a month, he was fully recovered.
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Happy Birthday Zachary
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Zachary's third year saw a great change in his health, his ascites never returned, his ear infections ceased, and his general health became quite good. Zachary was also about to receive a great surprise. A baby brother was on the way.
While Zachary was in the hospital, we had decided that we really wanted Zachary to have the love and support of a brother or sister. After much prayer, we became pregnant and nine months later, had Joshua, a healthy beautiful boy.
Zachary has had some challenges in his life but generally lives everyday as if he is in a candy store. He always has a smile, which is contagious and is easily amused. Little pleasures like tickles, kisses, the sun on his face are magical moments for him. They are for us too. They have taught us to enjoy every single moment that he is with us.
A beautiful poem was sent to us upon loved ones hearing of Zachary's illness. It illustrates perfectly, our situation and what it has taught all of those who have come to know and love our son:
I Am The Child
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of.
I see that as well.
I am aware of much ...
whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.
I marvel at your frustration,
knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation,
so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated. ,br>
I do not give you answers to your responses over my well being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards,
great strides in development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable...
I give you instead, opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf,
I need to go to the bathroom,
oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs,
your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire,
desire to stand upright, to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are
with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
Author unknown
Our faith in God had been tested and we often struggled to understand why our prayers for His hand to heal our son had gone unanswered. We realized that Christmas morning in the hospital why He hadn't blessed Zachary with what we perceive to be perfect health. God blessed us all with Zachary to teach us many things. He has taught us the depth of our unending love and commitment to Zachary and to each other. He taught us to have patience not only with Zachary but also with our families and ourselves. He taught us to live life in the moment and enjoy everything He has given us. He also taught us the most important thing of all, complete and unconditional love can transcend all. It can even heal our son.
One of Zachary's grand parents once told us that Zachary was an angel. We of course agreed but he continued by saying:
Zachary has been born and will die without sin. He will be granted his wings and will ascend into heaven with a clean and pure heart. We should all be so lucky.
eff: 04/09/2005