Thursday, January 4, 2018

Oh, Little one!

The alarm sounded at 6 AM, not my alarm but McKenzie's feeding machine. I almost couldn't believe it was morning, we were up most of the night with McKenzie (for the first time ever), she was so uncomfortable. It was 29 degrees with ice on my windshield while I attempted to warm up the car so we could head to see GI in Orlando (over 1,5 hours away). So, we bundled up and headed out.

GI confirmed McKenzie is indeed teething, how exciting! They also confirmed she is sick, how discouraging! McKenzie has an intestinal infection, a mouth infection and possible new food allergies. So, she has a bunch of medication and we did a stool study in hopes of finding out more. Its looking like she will be kept home and away from others as much as possible during cold and flu season - we want her to build an immune system, but not while her heart is still trying to heal. I know the summer should bring lots of fun, lots of development and hopefully no illnesses!

While I dislike seeing McKenzie sick, I am thankful she's home. It seems like it wasn't long ago when every time she got sick, she got admitted to Arnold Palmer. We never really know what to expect, we never really know when its "safe" to put away out emergency hospital bags. I think the hardest part of it all is knowing at any moment, things can change. This week she's home, but what about next? I am thankful her heart surgery is done as it's allowed less admissions - but the fear of her being admitted never really goes away as she's still a heart patient, still has an obstruction to her kidneys and still deals with dehydration. 

Becoming parents was life-changing in many ways, but becoming parents of a child with medical and special needs has changed who we are as individuals, how we think, how we live. I wouldn't change our lives with McKenzie for the world - but there are some days I wish she would catch a break for her own sake! Oh, little one - get well, you've got growing to do!

Wednesday, January 3, 2018

The New Year

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 imagine McKenzie is teething and these are normal symptoms of such; however, with a baby that has a history of medical concerns and a dire need to continue gaining weight we are returning to Orlando earlier than expected for GI to check her out.


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 week 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 lot 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!

What a year it's been, so far.