Journey to Becoming a Zebra - Part One

As this is my 100th post I deceided to do something special for the post.  I realized that I never wrote about how I was diagnosed.  It was a bit of a struggle but not as bad as some people.  I am going to split this into three parts - "Before EDS", "Getting the EDS Diagnosis" and "Post Diagnosis".

Before EDS

It all started on a late winter night, literally.  I was due to be born on March 17th, however I apparently could not wait and I was born at 29 weeks on December 27th (which is kinda creepy as the family has a strong 27th theme with birthdays - will post that another time).  My dad's side of the family had left earlier in the day to go home as they were down to our place that Christmas.  Mom ended up having spotting and then her water broke. My parents were very worried as they never thought that they would be able to have children (and adopted my brother 9 years previous) and mom had suffered a miscarrige.  My parents got their friend (close friend, my brother and their son grew up together) to come and stay with my brother and rushed to the hospital.  We live about an hour from the nearest Children's hospital with a NICU but one my mom got to our hospital the doctor's realized that even though they wished they could send my mom by ambulance to the Children's hospital, they knew that there just wasn't going to be enough time to do so safely and I would have been born in the back of the ambulance which was even more risky.  The doctor's instantly took my mom to have a c-section and a special neo-natal ambulance with incubator and all the needed tools was dispatched to our hospital to wait for me.  I was born at 11:46pm and weighed only 2 lbs 8 oz.  The doctors were doubtfull that I would survive and my mom was never even allowed to really see me before the sent me off to the children's hospital.  My dad was distraught (and had only been sober for a year and a half) and did not know what to do but ended up staying with my mom (and brother) to wait for news from the other hospital.  My nan and poppa on my dad's side found out what happened when they called to tell my parents that they got home safely and when they heard the news they immediatly packed up and came back down.  That was it for that night.

Over the next week or so my dad finally got down to see me and was able to hold my entire body just in his hand.  Of course living an hour away and having a son at home, and my mom being in the hospital still (recovering from the c-section and shock) they had to rely a lot on the nurses in the NICU for updates.  It scared them when they would call down and the nurse would tell them that I only had 6 apnea attacks that night, dad would ask what an apnea attack was and the nurse non-chalantly told him that it meant I had stopped breathing!  It also took a good few days before I had a name and the NICU nurses told my parents that they needed a name so they could talk to me.  I dropped down to under 2lbs that first week but amazingly survived with very very few health problems.  The doctors were all shocked that at 29 weeks I was born with fingernails and hair.  They did many many tests but could never find out why I was premature.  I was moved to our hometown hospital after about a month and finally released home on February 5th to very scared parents lol.  More and more tests were done with still no reason for me being a micro-preemie.  My parents had thought about having another child soon after me so I would have someone close in age to me since there was such a age difference between my brother and I.  The doctors told them that it was definitly not advisable as they had no clue why I was so early and couldn't do anything to prevent it happening again, which was also likely.

As a toddler, my parents had to stop me from walking.  I had to get special shoes with a lot of support and was put in a 'jolly jumper' to help build up muscle.  Doctor's were still confused over me as even being so early, I was hitting all of my developement milestones on time (preemie's should hit their milestones according to their due date, not their birthdate - at least that was done 30 years ago).  Once I was getting mobile the doctor's sent me to the 'rotary center'.  It was a place in town that dealt with all types of disabilities and developement problems (ironicly my nephew ened up at the same center 20 years later).  My dad was very hesitant about it as he was very very protective of me.  As fate would have it though the first appointment they took me to, the receptionist was a long-time friend that dad didn't even know worked there who assured my dad that I was in the best hands possible.  Obviously I do not remember any of this but I stayed with the center for a significant time (walking through to kindergarten).  I was done there when they did pre-school testing to determine if I was 'ready' to start school (because of my birthdate I could start at 4 or 5), they deemed it was better for me to go to school early as I was intellectually ready but socially immature - which would just get worse not being in school.

I had the normal childhood issues growing up but times ten.  I had my tonsils and adenoids out, tubes in my ears (twice), a concussion and bilateral pneumonia so I was in the hospital quite a bit when I was younger, like up until the age of 8.  I did have chronic sinus infection so was on a pile of antibiotics and did miss quite a bit of school all the way through high school (and still have at least two infections during the colder months). It just seemed like I had a weakened immune system, which the doctors always just associated with the prematurity. I had to be formula feed as a baby because I was lactose intolerant so that was used as a reason too.  One thing that was quite clear though was that I was a massive klutz!  Sports were just torture for me as I was always twisting my ankles or falling over.  The only 'sport' I did was swimming lessons, and that was mainly because we had a swimming pool in the backyard and my parents wanted to make sure that I could swim and handle myself in water.

Things did start to change in high school, which is typical for EDSers as hormone changes really affect us.  I remember being 'diagnosed' with tendonitis in my right hand in grade 9, sent to physio for my knee in grade 9 and just more minor injuries.  I also started right back up with the sinus infections and would get run down really easy.  In my school not all subjects had mandatory finals.  If your mark was below a certain grade, or if you missed 10 or more classes a term you would have to write the final.  I had to write every final that was given in high school.  I also suffered with really bad acne all through school and in grade 12 or OAC (Ontario Academic Credit - grade 13 if you wanted to go to university, college and university is quite different in Canada unlike the US) was re-diagnsed with asthma and chronic sinusitis. 

However it was in my last year that things started getting iffy.  I was suffering with more and more joint pain (wrists, knees and one ankle) and more infections.  First semester of my last year I was sent back to the physiotherapist for treatment on my right knee.  And after there was no improvement (and slightly making it worse) I was refered to an Orthatpedic Surgeon.  I was able to get in to see him near the end of the year and after a very breif appointment he decided that he knew what the problem was and that surgery would fix it.  So I was set up for a surgery date of early August.  This was scarey as I was due to start university 2.5 hours away at the beginning of September.  It also ended up being the worst decision of my life!

What happened after surgery was ....... Part Two ;)