A little update about my Mito disorder

Yum Yum!

 Today is the one year anniversary of being discharged from McMaster Children's Hospital. I left with a prescription for 12 meds, tube feedings for an hour every 3 hours, head pokes for blood work once a week, I could barely lift my arms and I had a prognosis of only living for a year. I feel the strongest and healthiest I've ever been! Mommy took me to my favourite place to celebrate. McDonalds! We went to the Kitchener market food court on King Street.









A little update about my Mito disorder

Dr. T had informed us that there was research being done at the Limeridge Mall (in Hamilton). A few months ago researchers collected 2700 random samples of blood donated by shoppers to test for my particular Mito mutation. (My mutation of a T being a C). They found that out of 2700 samples, that 3 people had this particular mutation, however these people had no symptoms. This research suggests that this mutation isn't as rare as they had once believed it to be. So then what makes the severe symptoms of this mutation so rare?

The research is starting to point to other DNA mutations passed down paternally. Mommies pass down the C mutation, and daddies pass down some other DNA glitch and voila you get an offspring like me! However, how does one start looking for whatever that DNA catalyst is, when those daddies have no symptoms and there's only been a handful of mes in the world! Good luck researchers :)

An update of my new tricks

My $2.99 shoes

Since my last physio session with Pam I have been on a steady learning streak. In addition to crawling up a ramp, I have learned:

- To pull myself up to a stand in my crib
- To turn and reach from the couch to the table (still only a minimal distance, if it's a big gap where I can hardly touch I fall over, my balance is still pretty wonky)
- I can maneuver the corners while cruising at the ottoman, although I have to be pretty distracted
- I have been pulling myself up to my knees on furniture
- I can clap
-I can say maaaaa (although it's not directed at my mom, I just make the sound)
-I can go on my tippy toes when I'm holding on to the couch

Yup folks all these are new within 2 weeks!

An update on Feeding

I've been doing pretty good with my formula. I am down to mostly 4 sippys a day. I take them without too much effort, which is a win for me! However, I still hate solid food, I don't touch it and occasionally will freak out when food is on my tray.  I foresee this being a long process, but like everything else I just do things the Ethan way. No one knows what order I'll do things in or at what time, it's just me.