Her first trip to Build a Bear:)

Her first time performing surgery. She did a great job!

Some of our fellow area Mito fighters at Cinci Children's Cincinnati Walks for Kids 5K. Yes, she can walk, but she was exhausted.

Organization, or attempting it;)

What to do with all the medical supplies? This doesn't include Zevex bags or Farrell bags or Formula!

Ava up to her usual self.

Not a whole lotta new stuff going on, more of the same. My baby girl is still up to her tricks. Mitochondrial disease is a chronic disease that will last her whole life. I've been reminded that 80% of children diagnosed with Mito before their 5th birthday will NOT make it through puberty. Since Ava is only 3, I am holding onto all the hope I have that a cure (or reliable treatment option) will change that statistic.

Ava is still having her hypoblycemia. There have been multiple "data meetings" between her doctors and they have a list of things they want to do. Endocrine has failed to show up, which I'm told is very common for them. It ticks me off royally. Neurology and Gentics have a list.... She will be getting a continuous glucose monitor put in. This is similar to an insulin pump or IV. This will check her blood sugar over 200 times a day. The liver biopsy has been put on hold simply because I refuse invasive testing right now. Water deprivation testing still needs done, as well as a few other things.

The fresh muscle biopsy to do more extensive Mitochondrial testing (MNGIE and a few hundred others) have also been put on hold by me. Let me explain why. We know she has complex 1 due to a positive muscle biopsy that was sent to Cleveland and Baylor. There is no cure for ANY Mitochondrial diseases. None of them. If I took her to get this new biopsy, she tested positive for complex IV or MNGIE or whatever...Then what? There is no magic pill for any of these diseases. No treatment options. No trials. Ava doesn't have Leighs, so she can't do the EPI trial. I will have consented to another surgery that will fix nothing. I am biding my time, waiting for a better, less invasive test. I refuse to put her through more pain to appease my curiousity. We know she has an Electron Transport Chain deficiency and that's enough right now.

Ava is happy and mostly stable right now. She's playful and she loves life. She loves school!