Routine is the foundation upon which you can direct your family’s chaotic energy into a safe direction. Having an established routine allows your children to go through the necessary motions of their day without worrying about what’s next. Some of the common hurdles are inconsistent nap times and unexpected activities. Of course, these are all more pronounced when you have more than one child. Fortunately, there are tricks to handle even the most frustrating situations.

Quiet time is a great way to handle nap time, especially for your children who no longer take naps. Set aside a two-hour window and enforce quiet activities for all of your children. You get less noise, your napping child gets to rest, and your remaining children get time to do quiet activities like coloring or homework. All of your children may not agree, but everyone wins.

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Making Blood Draws Easier for Kids

Making Blood Draws Easier for Kids

No one likes having their blood drawn. Trying to explain to most children why someone absolutely must poke them with a needle isn’t realistic. It comes down to “no ouchies” which, frankly, is an argument I have a difficult time winning. With kids, you can’t exactly have a thorough discussion on the merits of whether or not these specific tests will provide adequate insight into their current medical problem.

I’m going to share what has worked for us. I hope it works for you. There’s no judgement if it doesn’t. Every kid is different! First, infants and toddlers under two. You really can’t do much for them except hold them down firmly with cuddles to minimize the stress and discomfort. Your focus will be more on the nurse. Ask yourself:

  1. Does the nurse have all of their supplies ready and accessible, while still having them outside of your child’s reach?
  2. Is the needle your nurse has pulled uncomplicated? It should look like a sewing needle, except it’ll be hollow.
  3. Are the test vials present? Sometimes nurses pull blood by syringe. That’s also fine as long as the syringe is ready to go.
  4. A second nurse will usually be present. While you hold your child down, the second nurse will either perform the blood draw or ensure the site they’re using stays completely still. I recommend highly to ask for a second nurse if there isn’t a plan for one to assist. It’s worth the wait.

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Last Day of Goodreads Giveaway

If you haven’t already heard, I’m giving away 10 free signed copies of my book Becoming a Medical Mom on Goodreads.
It has 3 five star reviews, 2 on Goodreads and 1 on It’s an excellent resource for parents of kids who have medical needs (and I’m not the only one that thinks so)!

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My Child is Sicker Than Yours

My Child is Sicker Than Yours

I ignore it as much as possible, but every once in a while I stumble across a conversation involving this awful competition. It goes something like this…

“My child has hypotonia…”
“Oh, so does mine! She also has a trach and a gtube”
“Well, he doesn’t just have hypotonia. We’ve been struggling with…”

The discussion continues. By the end, the entire world knows both children’s full medical history, even if they don’t know their first names. What on earth is the point?

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Why I’m Thankful My Toddler Screams

Why I’m Thankful My Toddler Screams

My favorite toddler in the whole wide world has decided for the last several days that screaming at me is the key to his happiness. He screams at me when he’s happy, sad, upset, angry, etc. It’s like he’s just discovered that he can speak in whatever volume he wants and the dial got stuck at MAX. Come to think of it, that’s probably exactly what happened. There isn’t enough caffeine or headache medicine in the house to help my headache right now.

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Mistakes and Five Tips to Avoid them or Minimize their Impact

Mistakes and Five Tips to Avoid them or Minimize their Impact

Everyone makes mistakes, and we all know that. We’ve been told a million times, “everyone makes mistakes, don’t beat yourself up over it.” That doesn’t quite help at the moment though, because the stakes are a bit higher than they’ve been in the past.

Forgot to turn on the pump last night? That’s less calories a continuously fed child is going to get, and it’s not hard to do. Even more common, your child rolls just the wrong way and disconnects himself from the pump. He doesn’t wake up because he’s exhausted, and you have no idea. When one of you finally wakes up, the bed has gotten all of the feeding and some stomach acid. You try to prevent it, but nothing is fool-proof. Besides, you can’t connect it too tight because it needs to release if your child gets tangled in the tubing!

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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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Ableism and its Impact on Our Children

As parents, we’re keenly aware of the difficulties our children struggle with and do our best to help them blend in with the rest of society. We know what happens when you don’t blend in. You get stares. Children ask questions, and instead of answering them the parents shush them, as if the act of noticing someone else is different is inherently naughty. The child’s question goes unanswered, and so the child stares. The parent looks everywhere but in your direction and ignores you and your child’s existence.

“…the “ableist” societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people.” (1)

Is this the intent of the parent shushing their child? It’s doubtful. In the process of learning, children have a tendency to ask a lot of questions in public that aren’t appropriate public topics. The intent of the parent is likely good. Unfortunately, those good intentions send a specific message to the child. Disability is to be ignored. Do not try to understand why someone looks different. Leave the person that looks different alone (avoid them).

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Dealing with, What if?

This is a fairly typical problem, but takes on a whole different form when applied to the health difficulties of a loved one. When it’s your child, it can be completely overwhelming to think about all the different possible scenarios that could happen. Every procedure has risks. Every time your child goes into the doctor’s office they could get sick (and for many special needs kids, that’s no minor thing).

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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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