What Can I Do to Help?

What Can I Do to Help?

This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.

It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.

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Becoming a Medical Mom Review

Reblogged from Sunshine and Spoons. Thank you for the glowing review! ❤ ❤ ❤

 

This post contains affiliate links.  Buying from them does not cost you anything extra, but I will get a small commission which helps me keep this blog going.

 

Several days into Davy’s 9 day hospital stay at the age of 2 months, I realized that I knew nothing.  I felt ignored by the doctors and confused by the terminology.  I constantly thought of questions to ask, but forgot by the time a doctor made it into the room.  I cried frequently, unable to figure out how to deal with the fact that there was something wrong with my baby boy.  I wanted to know why this was happening.

Becoming a Medical Mom Review

When we were discharged, it only got worse.  In desperation, I bought a plain spiral bound notebook, the kind I used to use in grade school, to try to keep track of all the information and questions I had for Davy’s many medical concerns.  I stumbled along and eventually came up with a coping system for navigating my new life as a medical mom…

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Packing for Vacation

Packing for Vacation

First, congratulations deciding you’re willing and able to take on a vacation. I personally find the idea of going to some other place foreign to our toddler and trying to stay there for more than just a few hours terrifying. Staying the night is quite an undertaking. We’re planning to do it for the first time this summer. Anyway, the whole process is scary enough without forgetting something so here’s some helpful information on how to pack for your adventure.

If you touch it on a normal day for your child it needs to go with you. Find a way to mark items with brightly colored tape or maybe placing them in a certain place. The last use of the day means the item gets packed up. This does make packing an all-day process, however, it makes you much less likely to forget things. When I pack myself I do it a few days before we leave. That way I don’t forget anything I need to be comfortable in the process of making sure my son has everything he needs to eat and stay healthy.

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Teaching Our Son’s Immune System

We spent almost two years keeping our son away from anyone who was contagious and many people who might be. It was for good reason. His weight was precarious and when he got sick he got REALLY sick. A normal illness would take twice as long for him to recover from as it should. Meanwhile, he would vomit more food just as he really needed the extra calories.

When we first heard we could get him out more and worry much less about illness we were really excited. He could go to play groups. He’d be able to play with other kids his age at church. It sounded like it opened so many doors! In reality, it’s been a bit of a nightmare. He still takes a long time to recover from many illnesses. If we catch something at the same time he’ll be struggling with it days after I’m better and it will eventually settle into his ears, nose, and throat.

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Check Out My Book, Becoming a Medical Mom!

Check Out My Book, Becoming a Medical Mom!

Did you know I wrote a book? It’s a comprehensive guide to coordinating and managing your child’s medical care.

It received a 4 out of 4 rating from OnlineBookClub.org’s Official Review. Here are two highlights from the review:

“Ashley gives the good and bad of most situations in dealing with the basic parts of having a child with medical issues. She is not partial on subjects and doesn’t glorify doctors or disdain them. She tells what you will expect, terms and titles you should understand, and the basics of traversing the initial medical protocol.”

“I think this book is a great read for anyone that is or will be a parent, because everyone, and not just definitive situations with medical issues, should know what all goes into being a parent with a medical situation and what to expect.”

According to customer testimonials…

“I’ve been living the Medical Mom life for nearly 12 years. This book is VERY well written and covers what I wish someone had told me all those years ago…”

“It’s written in a way that moms can understand and clearly explains medical jargon that medical moms might come across.”

You can see the full reviews on the book’s Amazon.com page.

You can preview the book for free on Amazon.com as well. If you’re still on the fence here is the book’s description. Feel free to ask any questions you have in the comments and I’ll respond within 24 hours!

Becoming a Medical Mom

A “Medical Mom” is a mother of a child with medical difficulties. Typically these mothers have been through one or more hospital admissions. Their child may or may not have a diagnosis. At first, they’re frazzled and unsure but, over time, they become staunch advocators for their children and their medical needs. My goal is to reach the frazzled and unsure beginners and expedite their development into the advocates their children need them to be. Everyone has to start somewhere. The journey to becoming a fully-fledged medical mama is no exception. Whether you have some medical knowledge already, or don’t have a clue what any of the words the doctor is using mean, you’re in the right place. I’m going to make sure you know the basics. By the time you’re through, you’ll know how to survive admission, whether it’s a day or a month.

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Car Rides with Vomiters

Car Rides with Vomiters

There are a lot of kids who vomit in the car and it’s mostly an annoyance. For our son with Noonan’s Syndrome every bit of food counts. He has difficulty gaining weight under normal circumstances and getting car sick makes it that much worse. If you find yourself thinking, “It’s not that big of a deal,” please remember it is a big deal for our son.

One of the first things we were told to do with our son to soothe him was to toss him in a car seat and drive him around. Our first pediatrician even recommended sleeping in a car seat as a way to lessen the discomfort of his reflux. We did try these things before writing them off but they weren’t helpful for us. The angle of the car seat seemed to guarantee our son would puke all over himself, in the car or out of it.

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Transitioning Formulas

Transitioning Formulas

The process of transitioning from one formula to another should be done under the guidance of your child’s pediatrician.

There are many reasons you might change your child’s formula. Some of them aren’t medical at all. The price may simply go up on the one you’re using and you decide to switch to a less expensive brand. For the purpose of this discussion, I’m going to focus on the medical reasons. I’ve listed some common medical reasons below.

  1. Gas / Fussiness
  2. Mucousy stool
  3. Bloody stool
  4. Vomiting / Poor weight gain
  5. Constipation
  6. Diarrhea

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