Tag Archives mitochodria disorder

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 she has multiple Mitochondrial deficiencies, including MNGIE. Her diagnosis was made with a muscle biopsy. A…
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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 getting less terrified.  Her Mitchondrial disease is starting to progress.  Her liver is enlarged, her motility is terrible,…
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I hate this

This disease is terrible.  So many children are suffering from it.  Please pray for Maggie and Cooper as they fight end stage Mitochondrial disease.
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She Needs a Beak

I’ve been a terrible blogger lately. I’m sorry. Ava had a week of appointments this week. We have successfully restarted G tube feeds again. She is continuous 21 hrs a day with one mini bolus. The trick is keeping her blood glucose up, and we are still walking a fine line with that. Some of…
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Christmas is over

Now that Christmas is over, we are so ready for Summer!! Dakota and Christian are loving their Christmas break, playing video games all day.  They are both doing great!  They keep me grounded when I need to be. Ava is doing ok.  We’re battling hypoglycemia and energy problems lately.  She’s going to start going to …
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Keeping Up

I know I’ve been MIA lately. Things are busy with back to school for Dakota and Christian. Ava’s appointment schedule is tiring. Today was hematology clinic. This specific doctor was one of the doctors that cared for me when I was Ava’s age with Neuroblastoma. She’s treating Ava for her ANC counts and anemia. She’s…
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Hypoglycemia

We just got home from another stay at Children’s.  Ava’s blood glucose levels were 41, so she was admitted for a few days.  Genetics says this is how Mito effects some children – dysmotility and hypoglycemia.  She’s having the big muscle biopsy at the same time as her gtube placement.  We’ll find out more when the…
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Some answers

When Ava was in-house last month, Genetics did some preliminary Mitochondrial workups. They even sent some blood to the Mayo Clinic. Some of these tests have given up some answers. It looks like Ava has a Mitochondrial disorder (the Dr is 99% positive). They have ordered a muscle biopsy to be performed this Summer to…
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Happily home

Ava spent the weekend in-patient again.   We spent some time with Endocrinology and Genetics.  Genetics actually spent anout 90 minutes talking with me today.  Hypoglycemia and blood glucose checks every 2 hrs left her miserable. They are now worried that Ava has a Mitochondria disorder due to so many different health problems.  It was explained to…
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