Happy New Year, 2018!

As we entered 2018, we were quickly reminded of McKenzie’s health. The last few days have been full of uncertainty as she has had several fits of discomfort and recently stopped tolerating her feeds.

Of course we’d like to assume McKenzie is just teething and these are normal symptoms of such; however, we know this isn’t the case. After a long weekend of instability, I called and made the appointment with GI.

As we revert into our high alert, adrenaline overdrive mind frame needed to obtain the best care for McKenzie, we also revert back to our defense.  At times, having a medically needy child can be hard. It’s not hard because of their needs, or because of the attention it requires but because of those who surround us. Time and time again we find ourselves explaining why we keep her isolated during cold and flu season, why she’s not just a baby fussing, why we can’t just “give her a bottle”, and why we do things the way we do. Sometimes, it’s hard for others to truly understand her underlying medical concerns that often cause us to isolate her, often her fussing results in a diagnosis of some sort and her inability to just “take a bottle” as she’s been tube fed almost her entire life. As McKenzie’s parents, we are also teachers, doctors, therapists and so much more.

As the first month of 2018 is half way through, we are reminded to always be on our toes when it comes to McKenzie’s medical conditions. McKenzie is just a baby, but she’s a baby with a list of medical needs that should always be ruled out before assuming she’s just being “a baby”. As we move forward, we remind ourselves that we know what’s best, we know to trust the gut-feeling. We also remind ourselves that others love us, love McKenzie and only want to ease our uncertainty the best way they know how and we are thankful. We are blessed, but ultimately we will always know what we need to do to keep her well.

As of today, I know McKenzie needs medical intervention – this can be enough to find a cure to her new discomfort or a cure to our new concerns. We hope 2018 will bring growth, stability and comfort for McKenzie and others on similar journeys, we also hope 2018 will bring peace, comfort and love to those surrounding us.

                                               Happy New Year to you all!



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