My daddy was home with us on Tuesday because I had a check up at McMaster. So my parents sat me down in the afternoon and explained to me about hair cuts and the social stigma that goes hand in hand with them. They told me that we would be going to a special place called "the salon" where my hair would be saved for future gawkings at my baby book. They informed me that I was a big boy now that I have seen my first birthday and that I could finally have my creepy mullet rat tail cut off! I have been growing impatient for this day to finally arrive and it is finally here.
On our walk over to this place called "the salon", mommy's eyes teared up, I stole a quick peak, she didn't see me looking at her. I decided right there that I had to be a brave little boy. Daddy laughed it off and called her a chump? I don't know what that is, but it sounds like it could be a yucky food.
We got to "the salon" and were welcomed by Veneth, who said hello and told me that she would be cutting my hair. She placed me in Lightening McQueen because according to her "it was the only seat with proper restraints".... Be Brave Ethan.... deep breaths...
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| Before haircut |
She placed a long cloak on me that had
Pengys all over, I was suddenly very calm and relaxed. Pengy's friends
had heard my inner turmoil and had come to show their support to get me
through this. She turned on the TV so I could watch this show called
"Dora". Then Veneth went to work on my hair. She commented that I was
such a good boy and that most babies are frightened. I can't see why! I
get to be a race car driver AND watch TV AT THE SAME TIME! Glorious! And
in no time Veneth announced that I was done! I took a look at myself in
the mirror.... Hey, why is my hair red? Veneth explained that it was a
coloured gel and it can be washed out in the bath. Hey, I'm not
complaining, I love getting baths! Mommy and Daddy congratulated me for
being so brave and as a reward mommy gave me the bag with my hair in it.
Uhhhh thanks Mom!
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| My hairdresser, Veneth |
I need to back up a bit here, I was way too excited to share with you my story of bravery! We did have a family outing that morning to see Dr. T. But even before that a few days earlier I had my 12 month assessment by Dave from Infant Development.
My test scores were as follows: (We'll get the not so good scores out of the way first!)
Gross Motor Skills: 15\60 This is my Bane... and I don't mean sexy Tom Hardy! Mommy! No wonder someone named this category starting with Gross. I am consistently behind but I am consistently behind by the same amount, so I consider this a win. Mommy asked if I can just be marked at the previous 8 month assessment for this and I would be almost perfect! Ohhh... that dream of getting a perfect score in this Gross category... One little boy can have his fantasies!
Communication: 30\60 (My Expressive communication is pretty sucky, I only passed all the questions in the 0-6 month range.. so Mommy thinks I'm sitting at about 8 months.. However I made up for it with the testing of my Receptive communication, where I was already well into the 13-18 month range) Booya!
Fine Motor Skills: 50\60 Lost a question because I am not "pointing" yet.. I am still using my entire hand. Sorry, I didn't know it mattered THAT much!
Personal-Social: 60\60 (hmmm I don't get why I'm rated on how much I help mommy by putting my arm through my sleeve and pulling off my hats and socks... but I'll take the points!)
Problem Solving: 60\60 this is my sweet spot! I blew Dave outta the park! He even tested me on things that 14-16 month old babies are doing! I am coming up outta the ranks to overtake those babies!
On to our family drive to McMaster to see Dr T. Mommy remembered as we got to the clinic that she had forgotten to bring my Health Card... Silly mommy. It wasn't a problem as they knew who I was when we walked through the door so she never had to hand my ID over.
Dr. T came into our room very excited to share that there is research being started to determine what other genetic factors may contribute to the severity of symptoms in the disorder. Why wasn't mommy effected the same and why was I so severe? We agreed to have a family bloodletting in a months time. So I guess they can combine mommy and daddy's blood DNA to study why in combination made my severe symptoms rather than less severe like mommy. I don't fully understand as I stopped listening after Dr. T informed me that I would be getting a full work up done at that time. Lactate, blood gases, electrolytes, acylcarnitine,.. the whole shebang! Sounds like a big blood bath to me!
Dr. T said I am doing well and that he can't believe that just months ago the doctors were very certain that I wouldn't make it. He told my parents to stop my creatine as it can cause people's tummys to be upset, and it may encourage me to eat more solids... That is my very last med! I am totally med free! Me Ethan Reimer down from 22 at the hospital, to 12 at home, to 0 right now! Wha whoooooo!
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