Saturday, April 27, 2013

A Daddy's Thoughts {Guest Post} Part 2

Now, let me go further back and further forward in the story...

When you have three children, with both male and female, born in the spring and in the fall, it feels as though the birth of a fourth child should be almost routine.  You know the drill of labour and delivery, the basic care and feeding of an infant is a familiar road, and you have an image in your mind as to what the addition of the sixth member of your household will be like.

Then you realize that you were both presumptuous and wrong.

Sarah’s entrance to the world was about the easiest of the four children.  No medical concerns, no issues with labour and delivery, and other than being a couple days later than we had planned on, everything went smoothly.

She was healthy by all accounts, but seemed somehow a bit more delicate than her sisters had been.  

We knew that Sarah was not a big infant, but neither Stephanie nor I fit in the description of ‘giant’, either... so we didn’t worry about it.

Then almost two months on, the midwife (Yes, midwife, not OB. The midwife was also an MD, but that’s an entirely different post) told us that she was concerned about Sarah’s lack of growth and that she was now described as having “failure to thrive”. This was noticed because Sarah had only gain ONE pound in that time.

I could think of several grown adults that I knew who weren’t exactly thriving in life, but had absolutely no idea what that meant for my little girl.  It turns out that it’s a generic medical term which loosely means, “Something ain’t right here, but we have no idea what it might be or what it might mean, so we’re going to run a whole slew of tests that your baby will hate and which will likely shorten the parent’s lifespan by 6-8 months due to the stress induced by uncertainty and concern for their child.”

This is where we returned to the Stollery Children’s Hospital in Edmonton.  Now, I am very thankful that we live so close to such a fine institution, as we have benefitted from their asthma clinic with Joshua and Andrea and it is really a world-class hospital... but I don’t like being in the position to need their help!

I can’t recall exactly what tests were done, but I do remember an early morning for an MRI that required Sarah to be under general anesthetic.  I also remember being present what Sarah had a test done by a cardiologist, and holding this tiny body still while they connected wires and she screamed her little lungs out. (Turns out that a really small heart has really tight turns in the arteries that makes a murmur for MD’s to be unnecessarily concerned over).  There were several more as well, but time has fogged my memory at this point.

A couple of years passed. We were blessed with assistance from the Early Childhood Intervention branch of Alberta Health.  (Wendy is a person who truly cares about her patients, and both Stephanie and Sarah have benefitted greatly from her involvement)

Eventually the road led us to one of the top pediatricians in Alberta, if not all of Canada.  He is extremely busy, but thanks to the persistence of our family doctor and the opportunity for our sister-in-law to speak with him during a shift one night, he agreed to an appointment to consider taking Sarah onto his caseload.  

Another set of doors was nudged open, and we moved into more advanced testing.  More blood work was ordered, another MRI, an appointment with a geneticist, examinations by physical therapists and many other “-ists” whose specialities escape my memory.  

We watched Sarah fall further behind her peers in almost every way. As a Dad, I wanted (and if I’m honest, still want) to “fix it”.  To fight something and make it better.  To find the specialist or treatment that would enable my youngest and smallest daughter to gain weight, learn to speak, to improve her balance and coordination, to learn her colors and so many other things.  So I did what I could, which was work to put food on the table, support Stephanie as best I knew how, and pray.

Then came “The Day”.

I won’t get into the whole story now, but I will never forget the day that we received the first diagnosis that rocked our world.  The pediatrician has poor tact by his own admission, and when we went into his office to receive the results of the MRI he lived up  (down?) to his tendencies.  He explained that the test had made it obvious that she had CP, due to the thinning of the corpus callosum. “She will always be behind her peers, and we’re not sure how far she will progress to, but she will continue to prog...”

And I stopped him there as I watched Stephanie go into overload and felt the blood pounding in my own ears.

“Hang on a second... what is CP, and what corporate thing are you talking about??”

Thankfully he looked up and saw that both Stephanie and I had been hit by the proverbial truck.  He then explained things more slowly.  The thinning of the corpus callosum (which is the dividing tissue between the two halves of our brain) means that there is less material to carry electrical signals back and forth.  It is a classic sign of Cerebral Palsy.  Sarah’s case is very mild, but it is somewhat complicated by the second diagnosis of microcephaly.

Cerebral Palsy is what causes Sarah to continue to stumble when she walks and to have poor balance.  Microcephaly means small-head, which not only means that she will have a small hat size when she grows up, but that there is also a smaller sized brain inside.
The third diagnosis was “Global Developmental Delay” which is a term that even the medical community doesn’t widely understand.  In short, Sarah is behind her peers in every way that you can measure it - physically, mentally, and emotively.  (As I wrote before, she exceeds them in loving others)

This rocked our world as we struggled to figure out what all of this meant.  As the provider for the household, I was wondering if I needed to start saving now to provide life-long care for Sarah so that she would be okay as an adult.  We had already figured out that as homeschoolers we don’t fit into the mold of the institutionalized healthcare system and that each step would be us fighting for our daughter. (evidently only a small proportion of parents want to learn how to help their children themselves, while most want to send the child off for someone else to ‘fix’ them)  There were WAY more questions than answers and even the answers didn’t totally make sense.

 ... Part 3 to follow soon....

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