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childrens

Ava is back in the hospital.  She’s febrile and tachycardic.  We’re waiting for an ekg to see if we can find a reason for her high heart rate, which is high even when her fever is down.  She’s on feeds...

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Discharged!

Ava was discharged from CCHMC :)  Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next...

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Dakota Brooke

Happy Birthday to my beautiful, smart Dakota.  What a joy you are.  You are growing into an amazing young lady.  A perfectly understanding sister to a medically fragile young child.  A perfectly bossy...

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Catch up

A lot has happened since my last post.  Ava has been inpatient twice in the last month for cyclic fever and hypoglycemia.  She also had to fast for an echo (she’s been having tachycardia), which didn’t...

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Long time no post

I took some time off blogging, but I’m back Ava’s medport went in just fine.  With the exception of strep colonization at the port site, all is well.  She doesn’t love being accessed at all, but she’s...

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Summer medical update

I thought it was time to do a medical update, keeping in mind that we don’t know more than we know. Here’s what we know right now: We know she has a Mitochondrial disease (ETC1), and many doctors feel...

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Ava was discharged

Ava finally got discharged yesterday. We learned what Red Man Syndrome is and that was interesting. It took a few tries to wean dextrose while on feeds, but she finally managed to maintain blood sugar...

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Hello there

I know I’m terrible at posting.  We are trying to enjoy our Summer.  Kings Island, movie theaters, Cincinnati Zoo and whatever else we can find to do.  Doctor appointments and therapy visits round off...

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Sleepy hero of mine

Lately we’ve had a lot of sleeping, which is par for the course with a Mito fighter. But she’s still a goofyball and look at her Beads of Courage collection. She’s earned every bead and she’s proud of...

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Rocking the boat

I’m a terrible blogger.  School is out for the Summer.  Dakota is an 8th grader, Christian is a 3rd grader and Ava in Kindergarten.  Dakota got a Presidential award For Academic Excellence for having...

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