Our first MAGIC Convention (and the 3 lessons learned)

It was mid-June and our short Canadian summer was about to make an appearance. It’s no surprise that my husband and I anxiously agreed to an annual cottage weekend in the Muskokas (the Hamptons of the North) with close friends who we only see twice a year.  A weekend that I always look forward to when the snow is still falling. That Friday I also received my weekly email from the MAGIC Foundation, a non-for-profit organization dedicated to supporting children (and adults) who have growth-related disorders.  The email included a reminder about their 21st convention which happened to be on the same weekend. A number of parents had shared positive experiences about MAGIC and the convention, however I wasn’t sure if we really needed to spend the money travelling, or lose our precious cottage time.  After all, our 2 year old daughter Sienna was too young to be able to enjoy the weekend or interact with the other kids. Plus we were still in a transition/survival mode with a 2 month old baby girl, and my new business launch. As I put Sienna to bed that night, my mind swelled with endless reasons why we should travel south to the suburbs of Chicago versus north to the beautiful Muskokas. For one, our daughter was only diagnosed with Russell-Silver Syndrome one year ago, hence her condition was still new to us. While I had read the Guidebook (which was beyond valuable in itself) I knew we had a lot to learn. This convention would help guide us on future decisions that would change Sienna’s life and our own. Plus the chance to meet other families who were like...

Russell-Silver Syndrome: Why my “little one” is so little

As many of you may already know from reading my story, or from my “Holistic Solutions” Facebook group, motherhood rattled my world when our first daughter was diagnosed with both a congenital heart condition and a genetic mutation called Russell Silver Syndrome (RSS). RSS is the reason Sienna struggles with feeding and growth, and she is the reason I created these programs for moms.  Given that this rare syndrome plays such an integral role in our lives, and at our dinner table, I thought I should introduce you to RSS. What is RSS? RSS is a form of primordial dwarfism. A rare genetic condition only affecting 1 in 75,000 to 100,000 babies. How is RSS diagnosed? RSS was first discovered in the 1950’s and experts are still defining the diagnostic criteria.  There are several known genetic causes that account for up to 70% of diagnosed cases.  Since the cause is unknown for the remaining ~30%, a set of diagnostic criteria comes into play.    A brand new study revealed the Netchine-Harbison Clinical Scoring System.  It suggests a person is ‘more likely’ to have RSS if they meet at least 4 of the following 6 criteria: Small for gestational age or SGA in length and/or weight (born under the 3rd percentile) Postnatal growth failure (they do not achieve ‘catch up’ growth by age 2) Relative macrocephaly (larger head size for body weight/length) Protruding forehead at ages 1-3 Feeding failure prior to age 2 (BMI under 14 for girls and 14.4 for boys ) Body asymmetry When our family ‘met’ RSS: After months of knowing something wasn’t right, our daughter was officially diagnosed with a genetic mutation resembling RSS at the age of one.  The persistent vomiting, slow weight gain, struggling to breastfeed,...

My secret to surviving motherhood

  During my first maternity leave I rarely ventured far from home.  My first daughter (Sienna) despised the car seat.  Whether it was 5 or 50 minutes, the drive would end with her screaming and mommy covered in vomit.  So I opted to stay out of the car and close to home. When our second daughter (Naomi) came along, Keith and I thought we were blessed with an ‘easy baby’.  You know those babes who ‘sleep through the night’ at 4 weeks, rarely fuss, and of course, pass out instantly in the car or stroller.   We were high-fiving when Naomi slept through her first 3 hour road trip while en route to a fellow nutritionist’s wedding (shout out to Mrs. Jesse Lee!).    However, our celebration may have been premature… Last week I made the bold decision to take both girls to see my parents.  Just the three of us.  The ride started off strong with Naomi asleep and Sienna taking in the Toronto scenery.  As soon as I rolled onto the highway, Sienna decided things were too peaceful and started to yell “uppy” (translation: “get me the heck out of this seat”).   Despite my attempts to console her with “Wheels on the bus” her cry elevated, so did my anxiety.  Within minutes 6 week old Naomi was awake and wailing too.   I was running on 4 hours of sleep and patience was running thin.  Then a glance in the rear-view mirror revealed Sienna’s bottle tipped upside-down and my homemade hemp milk formula pouring onto the freshly cleaned seats. The emotions were high and tears started to well up as I anticipated a long drive ahead.  But then I paused, reflecting on...

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