Well the boys are doing well...  Tyler cough was dramatically better last night - I am surprised as hes only been on the inhaled steroid for 4 days now, but wow - he only woke up once all night coughing!  (down from the 3-4 times an hour before!).

Unfortunately the '1 time' he did wake up was at 6:05am... and he was wide awake at that point since it was sunny out.

so early morning. :)

Brandon slept till 9... lucky kid.


Their both doing pretty good... Ty still looks very tired but hopefully he will catch up on rest over the week if he actually continues to sleep well.

Im off to Hamilton tommorrow - I will be meeting with Dr. Tarnopolsky, the Canadian mito doctor at McMaster. 

He will be going over my history and doing a muscle biopsy while im there (needle biopsy - not as brutal as the open one... he knows Ive had an open biopsy already but apparently he wants to run additional tests... not totally clear on it all but will be discussing it on Tuesday).

much as im not keen on the needle in the leg, I am hoping he can give us some solid answers and direction with treatment.

At this point all my docs insist he is the next step (last step? not sure), so after dragging my feet for 2 years i am officially off to see him.

Heres hoping for answers.


While Im there I will have the luck to have dinner with 4 other mito moms who live in the area on Monday night so Im really looking forward to the trip!

(and of course - a night of sleep...uninterrupted....  bliss.)



Thanks for checking in!!