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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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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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Recovering from Crisis Mode

Recovering from Crisis Mode

We made it! Dad has recovered enough from surgery to lift the toddler. The toddler has recovered enough from his cold to only need medicine overnight. I actually got a chance to take the REAL cold medicine last night. You know, the kind that not only cures all your cold symptoms but also knocks you out. Even if the symptoms were to somehow to break through, you still sleep like the dead.

The laundry and dishes were done over the last week and a half, but everything else took a backseat. You can actually see the path our toddler takes from one place to another. It looks like a little tornado meandered through our house on multiple occasions. Am I going to clean it up today? Maybe, but probably not. Today is the day for a victory lap! It’s time to celebrate making it through this most recent family challenge. I’m going to have coffee with a friend for at least an hour or two while Dad cuddles the little man.

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Generously Donated Signs for Medically Fragile Children

Generously Donated Signs for Medically Fragile Children

In response to the recent flurry of discussion around how to keep our special needs children well, one of the moms in our support group graciously agreed to donate printable signs for medically fragile children. I asked for a name to credit, and the creator generously declined.

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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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No Time to Slow Down

No Time to Slow Down

When Mom’s sick, everything keeps going. I know I’m not the first woman to mention this, and I won’t be the last.  It’s not very fun when you don’t have sick days. For the most part, you can always pop a pill and keep going, but the fatigue is overwhelming. Even if all of your symptoms are under control from medication, your body is still fighting something. It takes all of your energy you normally use for getting through your day and routes it somewhere else. You’re left with bleary eyes, sore muscles, and clouded thoughts. All the while, you need to figure out how much water you need to drink to stay hydrated if you knock back five or more cups of coffee on top of your illness.

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