Category Archives: Hospital Survival Tips

The Hardest Word I’ve Ever Said

Seven years. Over a thousand hours at hospitals and specialist appointments. Countless interventions at home. And it turns out the most important word to help my daughter’s treatment is this: NO. No… we’re not doing a nineteenth round of medication adjustments. It’s time for hospitalization. No… I won’t take her home from the hospital and…

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Helping Siblings Deal with “Survivor” Guilt

A month ago my 8 year old entered a residential treatment facility. Three weeks and 6 days ago, my 9 year old began to feel horrible about it. No matter how hard things had become at home with her little sister’s behaviors, her absence brings anxiety. Partly because said 9 year old has challenging behaviors…

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Raising a child with two competing special needs

I silently nudged her in the darkness. Slipped her out of her top bunk. Wrapped her in a blanket and ushered her to the van. Maybe if I didn’t wake her just yet, she’d forgive me, I thought. The sun wasn’t up yet, but I’d already been up most of the night, fearing the next…

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Journey Into The Unknown

My new son, Ronnie, is having surgery in two weeks – significant, scary surgery. I’ve been through many significant surgeries with my daughter, Ashley, including brain surgery twice, but since Ronnie just joined my family three months ago, I have no idea how THIS surgery will go. With Ashley, I can predict exactly how she…

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We are not alone.

As I was sitting on the floor next to the crib on the eve of Mother’s Day, watching my son struggle to breathe, I wondered how many millions of moms had been in that very spot before me. With me.

In how many homes, hospital and bedrooms were we watching over our sick kids?

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Plug In The Saw, Lucille

Ashley was cast today. Not for a play or a movie, but for those plastic orthotic things you see on the feet and ankles of many kids with physical disabilities. This was the third attempt at casting and finally, success was achieved. The casting process is almost exactly like getting a cast when an arm…

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Say ‘Ahhhh’

For the most part, I have been very blessed to find medical professionals who do an excellent job of providing care. I can say without a doubt that most of the doctors and other healthcare staff we see have never treated a child with my daughter, Ashley’s, unique combination of disabilities. But they are doing…

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Micromanage or bust

For the last week I’ve been giving Ivy her intra venous antibiotics. One is a slow push and the other is a pump that infuses the medication over 24 hours. I clean the area and flush the line. It’s been great at home. I set it all up. Ivy knows the order they go in and…

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Special Exposure Wednesday.

      Gran saves the day, making glove animals, while Ivy waited 22 hours, nil by mouth, for her PICC line. Thank goodness for Grans! Got an amazing moment to share? Why don’t you join us at Special Exposure Wednesday.  Please remember your comment love at each link you visit. Also blogging at Three…

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Prepare for turbulance, we have re entry in 5, 4, 3, 2 and 1.

Tomorrow, after twelve long days, I’ll be bringing Ivy home. I’m wondering if all of you with hospital time under your belts, experience re entry, like we do. Ivy is generally overwhelmed with the hustle and bustle of home life, cranky and out of sorts. After all, she has had the monopoly of attention of one parent 24…

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