Category Archives: Medications and Treatment Options

The Neurologist

Every 6 weeks or so, we spend part of our morning with The Neurologist. He notices Jack’s new hat. I notice that he’s lost weight. He asks how J is doing with school. I ask how his girls are doing in high school. We dance the dance. He tells me things I don’t want to…

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Making the Tough Calls

When does the risk outweigh the benefit? How do you decide if medical treatments for your child are more harm than good? Making the tough calls has never been easy, and apparently the weight of this burden never goes away. I remember my son, 4 months old, critcially ill and crying incessantly. Crying because he…

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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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Spina Whatida?

As many of you know, I just adopted a 15 year old young man named Ronnie. Ronnie is deaf and has spina bifida. Since my youngest daughter is also deaf, making sure Ronnie has all the appropriate supports isn’t new to me. But the spina bifida is. I have a bunch of questions. For instance,…

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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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Stuff I can’t believe I’ve said to doctors

“OK, I know he’s got microcephaly, but don’t you think all that hair hides it well?” “I’m sorry, I’m not convinced you know what you are talking about.” “The other day he grabbed one of my nipples while he was breastfeeding, I thought it was a good sign he’s going to be able to use…

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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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This Little Piggy Stayed Home

I am a worrier. I think that just comes with the territory when you are the parent of a child with special needs, especially a child with significant medical issues. But nothing has consumed me with worry as much as the H1N1 virus. I worry each year about the seasonal flu, and my family was…

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No H1N1 vaccine for us, thanks

A few weeks back my mom asked if I was going to get the “swine flu shot” for Bear. My answer: “NO!” She looked at me like I am nuts (a look I get from her and others all.the.time.) and I proceeded to ramble off my reasons for choosing to not get this new vaccine….

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