" Down Syndrome.... What the heck is that? " When I was 16 weeks pregnant, the doctor called to tell me my blood results showed 1 and 7 chances of my baby being born with Down Syndrome - the phone call was short, but it quickly brought me to my knees. I spent weeks searching… Continue reading Awareness
In just 14 months, our daughter has accumulated 12 specialty doctors, 3 therapy interventionist, 24 active medical conditions, 3 surgeries (one being open heart), 8 hospital admissions, 34 illnesses, and both cognitive and developmental delays. My day is consumed with medical appointments and/or therapies, my nights are consumed with research and failed attempts at maintaining… Continue reading A Medical Mystery.
“The parent knows best and the parent knows first” - David Grossman It starts with the smallest symptom and within seconds, you’re consumed with adrenaline and beginning your mental-check list. I have become all too familiar with the fight or flight response, I am a special needs mom; this is my life. When I started… Continue reading No one knows the days that almost crushed you or the fear that almost froze you.
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.
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!
McKenzie was discharged 8 days after her surgery. I was excited to take her home but nervous to be so far away from the children hospitals, what if she needed a doctor? It was an intimidating thought to not have assistance from nurses. Lori ( Landon's Mom) and I had a get-together with the hospital's… Continue reading Life after discharge;
"Sometimes, real superheroes live in the hearts of small children fighting big battles" I never imagined meeting someone so strong, fearless and full of life. McKenzie has continued doing well, she had several IV lines and her three chest tubes removed on the third day of recovery. Nikki has been my rock through these last few months, when… Continue reading Recovery