Happy 6th Birthday Ethan!!!

It is hard to believe it has been six years since you joined our family.  One of the things that really bothers me about your birth is that I do not recall all the details...what time were you born, what was your weight and length at birth?  I typically have to look these answers up to know them.  It bothered me all day not knowing the time you were born.  With the wonders of modern technology, I have the date and time stamp on the photos taken at your birth...so even if I do not remember the time, I can look it up.  It is no indication of my love for you that I cannot recall these details, they just were lost in the moment of your birth and the surprise that not everything was as we expected.

Over the past six years you have grown and changed so much.  You have changed us as well.  Before you were born, I had no idea that children truly are born with medical issues (I'd heard it, but it really doesn't hit you until you've lived it or watched people go through it), it was nothing we'd experienced before. 

I remember your first birthday, I struggled with how to celebrate it if you could not orally eat.  Honestly, I struggled with that for a while but have come to learn that you do not need to orally eat to thrive.  It is a social and interactive time but as long as you get your nutrition it really does not matter if it goes in through your mouth of your stoma.  That being said, I do still hope that one day you will be able to enjoy the tastes, flavours and textures of food. 

On your second birthday we just enjoyed watching you progress and grow and learn.  Little did we know that year would see us spending much of the second half of the year in the hospital with mostly respiratory illnesses.  Nor did we know that you'd soon start to lose your baby teeth due to rapid resorption.  Who knew one could miss teeth so much?!

Your third birthday continued much like your second and we spent most of the first half of the year in hospital for different respiratory illnesses, emergency brain surgery to reopen your Dandy-Walker Cyst and this is the year that scoliosis really started to present itself with a vengeance (as you can see from your right sided lean above).

Your fourth year of life you spent much of it impersonating a line-backer on a football team with the castings that we hoped would slow the progression of scoliosis and allow us to hold off going down the surgical route.  The extra weight was sometimes difficult to manage or to fit you into things like your wheelchair, car seat, clothing...  We took to dressing you in adult sized t-shirts and tried to manage any messes that might go into the cast.  This was a task that unfortunately proved to be more than we could accomplish.  But none of it ever seemed to hold you back.  Every time you've faced a challenge head on and conquered it.

Last year saw some challenges too, with a bad respiratory illness in April that showed us just how dangerous a cold can be for you; halo traction that surprisingly seemed to do so well for you and Shilla growth rod surgery for scoliosis that required a repair just 3 months after the rods were put it.  We struggled with the decision to start the surgical route and really questioned our decision the first few months.  Since your revision, I think things have started to improve for you.  With all the setbacks of the past couple years you have not been able to move forward much on your gross motor skills.  Hopefully this year will see continued improvements for you and another year with few hospital stays and a big dose of good health!  You're amazing and we love you more each day!

Happy birthday little man!