Not Your Mother’s Botox!

Jan 21, 2016 by

An amazing thing happens when a special needs child turns 2 (at least in our experience). It seems as if all kinds of new treatment options come into play.

Since we started Gavin on valium almost a year ago, we have been continually thinking about adding another “tool” to his ever-growing box of resources.  (This “tool” was not something that we could have added prior to him turning 2.) As with the valium, the idea of giving our now 2-year-old another “medication” was not something we took lightly. But we had to weigh the pros and cons and look at how this would impact his quality of life. He’s making progress but by adding this new “tool” would we see greater strides? Would we see regression? How would this impact his life down the road?  (Questions, it seems, we ask on an almost daily basis when it comes to treatment options for him.)

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Medically Complicated

Dec 2, 2015 by

A few weeks ago my oldest daughter developed a rash on her face. I initially thought it was acne, then eczema, and then…yikes. By the time I got her to her pediatrician it was partially infected and her face was red and swollen. I also had an extremely miserable kid on my hands. As we sat there in the waiting room, my “mommy guilt” kicked in, of course. I should have seen the doctor three days ago. Why didn’t I take this more seriously? What if this is something awful? My husband had added to this guilt (inadvertently of course) with his concern and questions for the doctor that he had fired at me as we drove to her appointment. Unfortunately for us, something as simple as a rash is never simple. Nothing related to her health is easy because our daughter is “medically complicated”.

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A totally normal life

Oct 8, 2015 by

A totally normal life

Every year, it’s hurt a little less.  To the point where most of the time, there is no hurt.  It’s just life. Our life is slightly more complicated than most but whatever.  It’s our normal.  Our normal feels so normal that I pause every time someone or something hints it’s not.  

A couple days back, we gathered for our annual Buddy Walk, an awareness event and fundraiser for Down syndrome.  An annual reminder that we’re not quite normal – but we are much loved.  A sobering yearly reminder of what life was, what life is now, and what’s always been.

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What They Didn’t Teach You in School About Health Insurance

Sep 1, 2015 by

We’ve known for a while that we needed to get Gavin a new adaptive stander. While we have one on loan from the N.E.A.T. Market, the issue is that it’s a little too big and he doesn’t feel comfortable in it because there’s no back to it (the stander makes him lean forward). Problem is when he tones, he does so backwards, where there is very little support to make him feel safe.

Knowing the process to get the new stander would happen after my company changed health insurance companies; I started asking questions weeks prior to ensure we would have benefits for coverage. Without getting into all the details, I was assured that it WOULD be a covered benefit. I checked my benefits summary once enrolled to verify that the stander was INDEED a covered benefit under “Durable Medical Equipment” and was not listed with any “exclusions”.

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you’re neither fish nor fowl when you’re chronically ill

Aug 24, 2015 by

There's a certain amount of attitude that goes into having a chronic illness. You accept that this is your body and that you have limitations. It really isn't the kind of situation where you can grit your teeth and pull yourself up by the bootstraps and you will overcome. The American Dream doesn't work on chronic illness. But you can give your chronic illness a big old middle finger and have fun with the things you can do.

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