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There is Skilled Labor in the Medical Mom Community

There is a large untapped labor pool that – if someone can figure out how to access it – would provide a significant amount of skilled labor to the marketplace. This set of people has a broad range of skills from software development to professional writing. Some individuals in this mysterious category excel at art, music, or storytelling. The one thing they have in common – a child with a medical condition whose care would cost more than they could earn working.

I recommend employers take a look at this community of people and sincerely evaluate whether or not they can put them to work. They will be part-time employees unless paid more than childcare costs for their child’s unique needs. Some of them may need to make enough, even part time, to replace what they get through state assistance in addition to funding their childcare needs. It won’t be easy or straightforward – but it’ll be worth it.

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Unexpected New Roommate

Unexpected New Roommate

My Mother moved in with us last week. There was an open invitation, but it had been open for a while. She’s been invited down for at least a year and had been putting off moving in. She was hoping the problems that forced her hand would resolve themselves. They didn’t, and as they grew worse the push to make the transition finally overcame the effort required.

The first week was a little rough. Our son likes having my full undivided attention, and the cat wants the rest. Both of them were a clingy mess over the past week as they jostled for who would get me next. I’m so relieved the competition is coming to an end. I’m pretty certain no one is getting any less love or affection than they got before. I can only assume the anxiety of the moment drove the whole mess, and everyone is now content to be back where they were before. I guess I do have to admit, it was a lot of work to get my Mom settled. They might’ve had to sacrifice a little of my attention for me to help her get comfortable.

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Life with a Tubie

Life with a Tubie

In honor of Feeding Tube Awareness Week, I thought it would be interesting to share what it’s like to have a child with a feeding tube. Yes, there are differences in how we do things sometimes but not as many as you might think. Not every family’s experience is the same so there may be some significant differences between our routine and someone else’s.

The first thing we do when our son wakes up is feed him. We have a schedule but it’s flexible enough we don’t need to wake him earlier than he’s ready to get up. He still drinks from a bottle even though he’s almost 2 years old because, typically, kids drink less when they transition from a bottle. Once he’s eaten as much as he wants we vent the air out of his tube. After, we feed him the rest of his food by gravity. We attach a syringe to his feeding tube without the plunger and pour his formula into the syringe. We allow his stomach to accept the food at whatever rate it’s comfortable and read books while he’s being fed. For most of this process, he sits or lays in my lap. We read two to three books during the remainder of the feeding keeping him relaxed and comfortable. We repeat the feeding process every three to four hours.

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Noonan Syndrome Awareness Month

Noonan Syndrome Awareness Month

February is Noonan Syndrome awareness month, so I would like to share some information about the condition I’ve learned through my journey with our son. It’s a genetic diagnosis. Our son was diagnosed in late 2015 through whole exome sequencing. There are characteristic facial features for Noonan Syndrome and a large head size is common.

Many children with Noonan Syndrome need feeding tubes. Even if a feeding tube isn’t necessary they’re likely to need some kind of high-calorie drink or formula to supplement their diet so they can gain weight. Those with feeding tubes do have a reasonably high chance of outgrowing the need for one if they do not have an oral aversion.

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Planning for Thanksgiving

No matter what your situation, the hustle and bustle can be a challenge. Our son’s vomiting and feeding tube add an additional level of complexity. Family drama on top of it all guarantees this season will be an especially challenging one. I’m certain I’m not the only one dealing with this, so I decided to share some of the things I’m planning in order to make the holidays as joyful as possible. I hope they help, for both of our sakes.

We’re hosting Thanksgiving this year. It’s the only way to avoiding missing out on the food trying to manage the toddler’s tube feedings and vomiting. Dinner is the high point of Thanksgiving, and without me managing the kitchen it would be impossible to keep dairy and eggs out of as many items as possible. This can be as simple as pulling our son’s food out before the butter goes in, but that’s difficult to do without being underfoot in someone else’s kitchen (mostly because wherever I go the toddler is not far behind).

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How Working Can Make You a Better Caregiver

It may sound like a bad idea to add another responsibility on top of an already agonizing workload. After all, managing a household is certainly plenty of work. Fortunately, many modern day conveniences allow for a household to still run well without sunup to sundown backbreaking labor. On top of that, many things people consider hobbies can be considered work if you’re good at them. Photography, painting, and writing are all legitimate careers. Is it going to pay your bills? Probably not, however if you enjoy your “work” then any money which comes from it is simply a bonus. Instead of a job it’s a break from the monotony.

Is your child able to be taken care of by someone else for the same, or less, money than you would make working full or part time from home? If so you can work from home and be available for any emergencies which might come up. For example, my son’s feeding tube is the only thing a babysitter would encounter over an eight hour period. With a weeks worth of training, someone could easily learn to do that.

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Beginning a New Chapter

Yesterday we went to see, what we expect to be, our son’s last new specialist. It was an emotional day for me because this felt like our last chance for new ideas. We left empty handed. All we have left to do is implement his care plan, which is straight forward albeit time-consuming.

Have you ever had the feeling you’ve hit the end of a chapter? Today feels significantly different from yesterday. Yesterday our son’s care plan still had the potential to change. Today we know exactly what we need to do for at least the next six months. While his care takes up the majority of my day, it’s a relief to know the load isn’t going to get heavier even if it doesn’t get lighter.

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Becoming a Medical Mom Goodreads Giveaway

Becoming a Medical Mom Goodreads Giveaway

Goodreads Book Giveaway

Becoming a Medical Mom by Ashley Bergris

Becoming a Medical Mom

by Ashley Bergris

Giveaway ends December 01, 2015.

See the giveaway details
at Goodreads.

Enter Giveaway

My book, “Becoming a Medical Mom,” is up for a giveaway on Goodreads. There are ten signed copies up for grabs, free with no strings attached. It’s basically a lottery system. As many people register as are interested. Ten of those will be selected by Goodreads and I’ll ship them a signed copy of my book.

This is the link: https://www.goodreads.com/giveaway/show/160173-becoming-a-medical-mom

If you’d like to know more about the book, the easiest way is to click on the book’s title on the giveaway entry page. It was originally written with inexperienced medical moms in mind. However, I’ve been told informally that even veterans can gain some insight. I encourage you to at least check out the preview on Amazon.com if you’re on the fence. It’ll give you some insight into the topics the book covers. I linked to the physical book because that’s what you’re going to get if you win a copy in the giveaway. There is also a Kindle version.  I truly believe this book is helpful and fills a gap which no one else has addressed.

Choosing a Support Pet

Life can be tough on caregivers, emotionally and physically. The added strain of caregiving for a child takes up a lot of emotional energy. Sometimes there’s another parent, and sometimes there isn’t. Even when there is, the other parent has their own struggles to deal with and can’t always be fully emotionally available to the caregiver. Support pets can be a huge help as long as you fully understand the commitment you’re making to yourself and the pet.

My recommendation as far as the best option for a support pet would be a house cat. Others have chosen dogs, birds, rodents, and even reptiles. It’s worth going over the pros and cons of each despite the inevitable length of the entry. I’ll start with my highest recommended pet and work my way down. Feel free to bail out once you’ve found your match.

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Cycles of Grief, Caregiving for Chronic Conditions

It’s been apparent for a while our son had medical problems. Until the diagnosis this month, we were in the dark about a lot of things. However, we still had enough information to know this would probably go on for a while and things would come up we didn’t expect. It took me by surprise this week when I was hit with grief not just once, but twice. I accepted our son had a chronic medical condition a long time ago. Why would I be so distressed at hearing bad news from his doctors?

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