Tag Archives: infectious disease

The White Prison

It’s hard to make plans when you have a special needs child. Their diseases are not predictable, so any vacation/date night/concert plans have to be tentative until they actually begin. Many times over these 6+ years, we have had to … Continue reading

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Burned

We parents of special needs kids are frequently plagued by burnout. I just read a post on “Love That Max” today about a special needs mom’s head exploding. It was tongue-in-cheek, but quite appropriate. My head feels explosive today—or maybe it … Continue reading

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Bridges

Sometimes, you have to stick up for your kid, even if it means burning bridges. We have had a few bridge fires throughout this special needs journey. The first one was probably with the infectious disease department at Children’s Hospital; … Continue reading

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Well

We have been very busy these past few weeks — at least, that’s my excuse for not writing more. Grace is averaging two doctor appointments per week, one at infectious disease and one at some other doctor (ortho, GI, etc.). … Continue reading

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Infectious

There are lots of things about Gracie that are irresistibly infectious – her cute smile, her beautiful blonde curls, her precociousness. Amazing Gracie can light up a room just by being in it. She is full of spunk and charisma. Everyone … Continue reading

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Doctors

We got a letter yesterday informing us that one of our very favorite doctors (Gracie’s infectious disease specialist) is no longer at her practice and will now be working at a different hospital with mostly adult patients. My first thought … Continue reading

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Night and Day

We saw Gracie’s usual infectious disease doctor yesterday to follow up from the frustrating appointment with the surgeon Tuesday. As usual, I left feeling like my questions had been answered and Gracie would get help. The doctor thought her finger looked worse … Continue reading

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