http://www.Facebook.com/Nothingdownaboutkenzie In November of 2017, I created an awareness page in McKenzie's name. I have never been an outspoken -" in your face with my beliefs " type of person, but after watching McKenzie endure so much within the first months of life - I started reflecting the fear and ignorance I was once consumed… Continue reading Nothing Down about Kenzie
We always knew becoming parents would be hard, but becoming parents to a child with both special and medical needs has changed the definition of "hard". The daily concerns and observations required are beyond the typical stresses of parenting a child without special and medical needs and can be exhausting. Our days begin early and… Continue reading Special needs parenting
It's impossible to know how you'll make it through - sometimes, it's impossible to know if you will ever see the day of stability in both your child and yourself. If I can offer any advice, any at all - based on this experience - open a line of communication. A friend once told me… Continue reading Home Reflections
About a month after McKenzie's second opinion discharge, I found myself racing through traffic with a pale, sweating, heart-racing, barely responding little body slouched in her car seat. The fear that overcomes you when your child's health decreases overnight is one I have become far too accustomed too. McKenzie was seen the night before at… Continue reading Admitted, Again.
This year has started out rough with McKenzie being admitted in January. A month or so passed with McKenzie on Elecare (new formula) but she continued to struggle with weight gain and her overall well-being was becoming more and more concerning. We immediately resumed our weekly GI and emergency department visits, hoping someone could figure… Continue reading The second opinion.
"I should have woken up this morning, my hair perfect and my babies outfit layed out. I should have had dinner ready promptly at five for my wife, who worked all day. I should have had my daily chores done and errands completed by noon, so I could spend the rest of the day playing… Continue reading A subconscious guilt;
In the last six months, multiple people have advised us that keeping McKenzie in a bubble isn't "good for her", "won't help her build an immune system" or they have voiced how unfair, unfortunate or inconvenient her health restrictions are. So, I invite you to learn the reasons for McKenzie's "bubble". McKenzie has Trisomy 21… Continue reading 31 Days
For the first time ever, McKenzie had a rough over-night, she was so uncomfortable and all we could do was hold her and hope she'd fall back asleep to find relief. The morning came quicker than usual as McKenzie's machine sounded promptly at 6 AM. Since McKenzie hasn't been feeling well, I scheduled her an… Continue reading Infections, Infections & More Infections.
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… Continue reading Happy New Year, 2018!
Christmas has always been my favorite holiday. I remember last Christmas when I imagined how amazing this year would be with our new baby. I never imagined we would face so many obstacles in such a short period of time, but I knew the spirit of Christmas would somehow shadow the unknown and provide a… Continue reading Merry Christmas!