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Medically Fragile Door Sign by Love For Everly

Medically Fragile Door Sign by Love For Everly

It was brought to my attention there is a beautiful hanging sign for only $12.00 at Love for Everly’s Etsy Shop. No printing is required, and the proceeds go toward the cause detailed below. I know a large portion of you don’t actually want to have something professionally printed. This is a nice alternative. As you’ll see when you visit, there are options for a baby boy, baby girl, young boy, young girl, and multiple children.


My daughter, Everly Marie Hopkins, was born with Trisomy 18, a complex and mostly fatal genetic condition. This chromosomal disorder affected every part of her body making her a prime candidate for infection, illness and early death. Any small sickness carried by someone else could potentially be life-threatening for her tiny body. In a desire to protect my daughter, I placed a specially designed sign on our front door alerting and/or reminding potential visitors of her fragility. I hunted high and low for a sign such as this but to no avail and thus had to commission a custom sign be made. Thus, came the inspiration for our sign…to politely but stylishly share how careful we must be around our medically fragile babies and children. If someone you love or know has a condition that requires extra care and barriers at times (like cold and flu season), this sign is the perfect choice!

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Your Child Looks too Healthy to Have a Tube

First, thank you. Unfortunately, it’s not that simple. If only getting to a low side of normal weight automatically made my son want to eat and drink enough to sustain himself. That would make everything so much easier. There’s something I need to share with you while we’re on the topic.

My child is healthy because of the tube. If not for the tube, he would still be off the bottom end of the growth chart. For the first year of his life he gagged on anything put into his mouth besides formula (and sometimes that too), so he wouldn’t have been able to take any medication. We suspect its because of his medication he eats what he does. He has all the behavior symptoms of GERD (gastroesophageal reflux disease) when left untreated.

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The Difficulties of Breastfeeding, a Special Needs Perspective

In honor of breastfeeding support week, I would like to share this with all of you. I wrote it a good while ago and decided to shelf it indefinitely. I think I’ve come to a place where I’m finally comfortable sharing. Enjoy!

Let me start by saying, a lot of people in the previous two generations do not understand breastfeeding. They bought in to the sales pitch that formula is better for your child. They believe bottles are better than the breast. The first time your child seems to struggle (even if only a little) being breastfed, the overwhelming response is that shoving a bottle of formula in their mouth will make everything better.

In order to balance this out, others have gone to the extreme to claim breastfeeding is best in all cases. There is never a situation where formula needs to be given, and if you give your child formula you’re denying them the chance to bond with you fully. The truth is in between, as is usually the case. There are situations where children need to be fed formulas. I didn’t know this when we started on our journey with our son, but there are formulas designed to help children with medical needs such as difficulty digesting and unknown allergies.

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RQ, What Health Problems is Your Son Struggling With?

I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.

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Cloth Diapering vs. Disposables, and Why I Use Both

Cloth Diapering vs. Disposables, and Why I Use Both

Cloth diapering is a lot of work sometimes. Every two days you have to do laundry. While this isn’t a difficult prospect for me because I have to do laundry every day, it would be a huge annoyance for many. My son gets sick, a lot. We measure the necessary size of his wardrobe by how many outfits he needs to get through a single day.

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A Special Needs Mom’s Never Ending Battle with Feelings of Inadequacy

I spent the first twenty or so years of my life judging my worth by grades. After that, it was job title and salary. It wasn’t until almost thirty that my son was born and his medical difficulties turned everything I knew about how to measure myself upside down. Some Moms compete over who has the sickest child, but that’s just not me. I’m perfectly happy when my son needs less medical intervention than someone else’s. I want him to be able to blend into a crowd and let something define him besides his health. At the end of the day, I’m left with no way to define myself good or bad. It leaves me feeling completely out of my depth. For every new thing I learn, there’s ten more things I need to work on.

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Learning to be a Stay at Home Mom, Part One: Acceptance

I didn’t plan to stay home with my son. I thought I would give birth, spend a couple weeks snuggling him, and then place him in a daycare close to my work where I could visit him during the day if I chose to do so. My husband and I had always evenly split the chores. With both of us working, we figured we could hire someone to come in and help once a week. It was a great plan for us and we were ready to execute it over a month before our son was even born.

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