Dr. T and Mr. E

Today was my follow up with Dr. Tarnopolski. If you remember at my last appointment he had taken me off of my last mito meds and wanted to see me today to see if I was adjusting okay. Apparently some of the meds take a month to get out of the brain. Now the plan was to give me a full workup of blood level testing. 

We got to the Neuromuscular clinic and there must have been about 15 people in the waiting room. Only standing room was left.. and that's not a good thing for a muscle disorder clinic! Obviously they were running behind. Our appointment was for 11:15am, which runs over my lunch time... great!

We finally get called into one of the rooms at 12:30pm, Dr. Tarnopolski's  assistant Heather informed my parents that there were toys on the bookself that they could get for me to play with. My mom thought "Strange they had never pointed out this fact before". Well, we found out why! It was another hour before we got to see Dr. T.  

Mommy, Me, Pengy, Daddy

I was getting pretty cranky waiting for all this time! I did not want to take my formula as it was cold! My parents tried to play an episode of Special Agent Oso on their blackberries, however being in a concrete cell did not help and the episode was constantly doing this thing called "Buffering" So I just got more irritated. Mommy tried distracting me by taking pictures.

Finally Dr. T came into our room and apologized for the wait, apparently everyone he saw today was complicated. Don't worry Dr. T, I've been there! 

He tested my reflexes and said they were normal, picked me up testing my tone, and said I had TRIVIAL hypotonia! Sweet, I hear that's good!

He asked my parents if I was walking yet, NOPE but I am doing some slow shuffling down the giant ottoman in the loft. Mommy said I can now sit up from laying down on my own, he said that this was excellent. He asked if I was saying any words yet, NOPE, but I am making a lot of sound. He said that's okay because I am only 13 months and am a boy. He was informed that I have been off my tube since April 24th, however I had lost 13oz. He said if I lose more, maybe try putting me back on the creatine, since it won't hurt anything. He was impressed that I haven't had any regression! And is excited to talk to his buddies at the Mito conference next week about me. Since I did not experience any regression off my meds, no blood work is necessary! He had seemed to forget about blood work for mommy and daddy, however neither one of them piped up to remind him!

My next followup appointment with Dr. T is in 6 MONTHS! I must be doing well!

Dr. T and Mr. E