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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

As often happens with children who haven’t been exposed to illness outside of their home, our son got sick. Each time he recovered we took him back to day care. I’ve never seen a kid catch so many colds. Some of the colds made him sniffle, others made him cough, and all of them gave him a fever. I started working from home a lot. It wasn’t ideal and it was significantly more stressful. I told myself to hang in there. This is normal, I thought, and once he worked his way through being exposed to so many other children he would settle in and enjoy day care.

Just like in early 2014 when this journey began, things did not work out as planned. Frankly, do they ever when kids with medical needs are involved? After six weeks of continuous illness, we took our son to the pediatrician for a variety of tests to make sure he hadn’t contracted something worse than five or six different rounds of the common cold. He hadn’t, and the pediatrician wasn’t certain why he didn’t feel well. A few months later we would receive a full explanation. I’ll spare you the waiting. This bout of illness kicked off an autoimmune reaction to our son’s blood platelets called Ideopathic Thrombocytic Purpora, or ITP for short. You know how people tell you that all those illnesses your children catch when they start school or daycare are just strengthening their immune system and won’t hurt them? The vast majority of the time this is absolutely true! This time we didn’t fall into the vast majority.

I held on for a few months through weekly hematology visits and lab draws. Other things came up also which I’ll cover in future posts. I resigned my job and went back to being a stay at home Mom. I’m glad I made the attempt. I hope to give it another go in the future if the opportunity presents itself. In the meantime, I’m making every effort to keep my feet under me this time around.

Keep an eye out for future posts to hear more about else what happened in the last year. I’m writing and publishing the story in pieces in case things come up along the way that prevent me from posting regularly.

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Deadline Changes for the Affordable Care Act

Deadline Changes for the Affordable Care Act

If you’re considering signing up for the Affordable Care Act (ACA) this year there are some important policy changes that have not been widely announced. The changes with the highest impact on the average family are unexpected deadline changes. Open enrollment for 2018 begins on Nov 1, 2017, and ends Dec 15, 2017. This only leaves a window of a month and a half to sign up for ACA coverage.

Tips to get started with obtaining coverage are available through Healthcare.gov. In previous years a public campaign has been launched through many avenues providing information to people who need it most. Do not expect the same outreach this year. The responsibility of knowing the deadlines and getting your application done in the brief window of time provided will be entirely your responsibility. More policy changes which make it difficult to sign up for the ACA may surface as the sign-up period comes closer thanks to the current administration’s dislike for the law.

Please, if you know someone who needs to sign up this year make sure they know about the deadline change. Outreach this year will be minimal compared to the information that’s been provided in previous years. The shorter deadline and lack of information provided will have a very real negative impact on the ability of people who desperately need coverage to sign up.

Happy Mother’s Day

It’s Mother’s Day! Happy Mother’s Day to all the mother’s out there. I hope you’re having an awesome day celebrating how important you are! Without women willing to take the risks and put in the time and energy to raise children, we wouldn’t have the friends and family with us we enjoy each and every day.

There are two categories of Mom that deserve a special mention. To Moms who aren’t off today because they have to work, their child has medical needs that never take a day off, or they’re just plain overwhelmed, I see you. I’m thankful for the work you put in each and every day. Your kids may not be old enough to thank you yet. They’ll get there. I hope your spouse, significant other, or another family member has a chance to give you the love and attention you deserve today. Even if they don’t, you’re still amazing and wonderful.

To the Moms with a child that’s earned their wings, they’re looking down on you today wishing you a Happy Mother’s Day from above. Grief is a perplexing thing. You may feel a hundred different ways today, more if the loss is recent. I’m wishing you a special Happy Mother’s Day. You’ve been through something no one can possibly understand without experiencing it themselves.

Enjoy yourselves! Eat all the food, get lots of presents, and don’t do an ounce of work more than absolutely necessary. HAPPY MOTHER’S DAY!

4 Spring-Inspired Stress Relievers for Caregivers

This is a sponsored post for Vive Health. I have been compensated for sharing it with you. All opinions remain my own and I was in no way influenced by the company.

Don’t worry, this post isn’t an ambiguous guide to caregiver stress relief with vague tips like “Try not to stress so much.” Caregivers know that fighting stress and anxiety is key to maintaining mental and physical health – so you can stay in tip-top shape to take care of your loved one. It’s easier said than done, however. Get inspired with these 4 real-world, practical ideas that can truly get your spring off to a bright and stress-free start:

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ObamaCare vs. Affordable Care Act

ObamaCare vs. Affordable Care Act

There has been a lot of discussion in the news lately about repealing and replacing Obamacare. The Affordable Care Act has also come up a lot in those discussions. Unfortunately, it’s not always clear during the discussions that these are the exact same law. It’s important to raise awareness of this issue, especially among people who don’t frequently follow politics or news “inside the beltway.” The main reason is the Affordable Care Act, hereafter referred to as ACA, is known for a lot of things people like while “Obamacare” tends to be associated with all the things people don’t.

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Before I Had My Son, I Wish I Had Known…

The biggest surprise for me after having my son was how much control other people wanted over decisions involving him. This came up quickly as he struggled with gaining enough weight from the day he came home from the hospital. Family members wanted to attend doctor’s appointments. Everyone seemed to have an opinion on how we could fix the problem. Some of them were insistent we created the problem ourselves by not following their “expert” advice. None of this was true of course. He was eventually diagnosed with Noonan’s Syndrome which is known to cause all sorts of growth difficulties and not just poor weight gain.

Looking back, if I had known going into it others would be so pushy and insistent to the point of blaming I would have more resistant about having outside involvement in our son’s health concerns. Though, I’m not sure that would have even helped long-term. After all, they probably would’ve tried to exert their influence in other ways if they hadn’t been using all of their energy they way they did. I recommend first-time parents set boundaries early and often. It’s your child. Don’t let anyone else tell you how to raise them.

What do you wish someone had told you before you began having children?

PTSD Symptoms and Support Organizations

After airing my podcast reading of a previous post about PTSD I was asked to gather and provide more information about PTSD symptoms and support organizations. I’ve thought long and hard about how best to cover this information. After all, people who are suffering from PTSD need professional help. Self-diagnosis isn’t reliable and it’s difficult to comprehensively describe any medical issue, much less a mental health issue, on a website with such a broad international audience. The approach I’ve decided upon is to aggregate the information as concisely as possible. I strongly advise anyone who believes they might have PTSD to seek the assistance of a therapist who has experience treating someone with PTSD.

If you are in need of immediate assistance call 911 or go to an emergency room. This post is for informational purposes only and is not a substitute for medical care.

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Finding Resources

Having a child with medical or other special needs can be overwhelming and expensive. Not knowing where to find resources is a common reason children and parents don’t get the support they require. I wish I could transfer everything I’ve learned over the past few years to you. My book is a great resource, but even it doesn’t cover everything exhaustively. Trying to address every challenge all in one place would have made it so vast and unwieldy it would’ve been unreadable.

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I’m Still Here

I apologize profusely for the silence. It’s not like me, and I’m disappointed in myself for letting it occur. I became overwhelmed approximately the end of November, and I’m only now getting my feet back under me. Again, I’m sorry.

A lot of things have happened in a month. I’ll stick to the highlights and keep this brief. Our son is beginning to do what most people would consider eating. He’s getting more confidence every day in his ability to keep food in his mouth and swallow it safely. A lot of us take it for granted – it’s never been a given for him.

We thought we would need to go in for a heart catheterization. The interventional cardiologist recommended against it because of the risk due to his bleeding concerns, and he wasn’t certain he would find any more relevant data than we already have. There is something concerning going on with our son’s heart, enlargement of one of the chambers, and there’s no apparent cause. So far he shows no visible signs of heart difficulty.

I haven’t forgotten you, and I hope to begin writing on a weekly basis again soon. Thanks for staying with me.

Podcast – PTSD in Special Needs Parents

 

Available for subscription on iTunes.

Available in written format on our website.

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