I learned that little boys are destined for shorter hair than girls

This past Tuesday I learned that little boys are destined for shorter hair than girls.

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...

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!

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!

I am now 366 days old! + a day for leapyear!

I am now 366 days old, plus 1 for leap year. I am still here! I made it!

My actual birthday was yesterday, but mommy says that I have to wait for my presents until my party. I didn't tell her but I did open some gifts! shhhhhhhhhhhhhhhhhhh

Grandma Philp came to see me and gave me a Winnie the Pooh birthday balloon, along with some clothes and farm books. She said my "big" present will come to me at my party!

Grandma Reimer dropped in with salad and fruit for lunch (for the adults of course! I don't eat that stuff!). She brought a present for me as well. She said my daddy used to have something like it when he was younger but a lot older than me, because it had marbles. I just think I'm smarter and know what to do with it at my young age!

After my Grandma R left my Grandpa Bill and Wayne came to see me in the afternoon. My mommy had warned me that it was a special day! It must be a special day as so many people wanted to see me and bring me these wrapped items! I got some Disney books to add to my book collection and a puzzle for an older me! I can't wait until I am that smart!


Mommy and Daddy have yet to give me a wrapped item! They told me that I am young enough that it wouldn't matter which day I get the item on and that it will be a surprise for everyone. I think they missed the memo somewhere where I am supposed to get a wrapped item on days where I am born! Well I can't say too much, but I can express my discontent! So you guys will have to wait with me until the day of my party!


Mommy shot a video of me learning to bum scoot for your entertainment.

I am now much better! I have learned to bum scoot pretty quickly and now love exploring every room, cupboard, drawer, door and toilet around the house. I have been bum chasing the cat all around the house, and a few times managed to corner her! I love this game! I am still trying to pull myself up, but am still too weak to be successful at this yet.

I went to my pediatrician today for my first year checkup.
Height: 30". (done by inaccurate tape measuring!)
Weight: 20 lbs 13oz
BP: 90/64
Oxygen stat: 99%
HR: 124

It was a day of stats! Dr. Rosner said she is happy with my progress and wants to see me in 4 months! She said I am still a floppy boy but I am getting stronger. Strong and floppy! She checked my chest, my tummy area and put me through a manly test. I passed all her medical tests, yay! I was even tired without my morning nap.

Now onto the dreadful topic of feeding. 2 weeks ago we got the go ahead to start weaning me off of tube feeding to see if I would be more hungrier to try solid foods during the day. So instead of topping me up at night, my mommy wasn't going to give me the extra ounces in my tube for the day. She was calling it "operation starvation". This scared me, so the day we were going to start, I came down with a cold! Yes! I got out of it! Oh no, she tells me that I am fine now and it's "operation starvation take 2" !

I am still just eating Cheerios, cheese, and infant puffs. Occasionally when mommy takes me to a restaurant I like to try things while I am there. Mommy says she would go broke if we ate out all the time so we have to figure out something.

Models at 1 year old !

My 1 year birthday photoshoot with my buddy Emerson (by Jennifer Wessels Photography)

I have entered boot camp!

Hello Ladies and Gentlemen!

It's about that time that I update you on me, so here goes:

The most important piece of information in this post is that my FIRST birthday is coming up soon. Of course everyone already knew that!

My parents have booked the community room at the Zehrs on Ottawa and Strausburg in Kitchener.

Date: May 12
Time 3:15-7:30pm

This will be drop in style, my mommy, daddy and I wanted to take this opportunity to thank everyone for their support over the past year and celebrate me making it to my biggest milestone yet! Doing something the doctors said I wouldn't, survive my first year! I want to celebrate with all my friends and family (new and old!), I couldn't have done this without each and everyone of you. I hope to see you all there! I may even eat a piece of cake! Here's to hoping!

More details to follow shortly.

Feeding: My feeding team sees me every 3 weeks now. They said I have good manipulation with my mouth and are happy that I am taking about 1/2 my daily formula intake orally. I have since realized that I am a big boy, and should not be eating baby purees. However, I haven't received the memo that big boys should graduate to solid foods. So, right now I am stuck on cubed cheese, cheerios and puffs. *sigh*

Kidsability: My appointments are every 2 weeks for occupational therapy (OT - fine motor skills) and Physiotherapy (PT - gross motor skills) with Lori and Pam respectfully.
                      Lori: Says I am doing great with my fine motor skills and I am doing appropriate things for my age. However, she would still like to monitor me.
                    Pam: Gross motor skills seem to be my weak point still. She is getting me to exercise on my knees more, and she said that maybe we shouldn't be focusing too much on getting me to crawl, just with my transitions (laying to sitting, and sitting to standing) and work on my arm strength from there. I like her, she's calming and I trust her.

Enter my mother... and her ways...
Since Kidsability is biweekly, and half the time is divided up between OT and PT my mom has informed me that I will be doing Private Physio until her benefits run out. Mommy loves the work that Pam is doing for me, but thinks I can use another session while it's still covered. So enter Cathy. You guys all remember Cathy. That one that makes me sweat and cry and it's like one of those boot camps your parents send you too when you are being a delinquent. Well I got me one of those!

I had my first session with Cathy since she was discharged in late December. Paperwork was filled out and I went straight to work. I was sweating and crying at the end. Oh these positions I am not used to get me all worked up! At the end of the hour I learned how to pivot using my LEFT arm.. yes I just said my LEFT! It's still kinda weird for me and I don't move all that much, but I am putting some weight on it now! This will help me in trying to go forward.. stay tuned!

Hot Hot Hot!

Last Friday: My Mommy and Grandma took me to the GRH Ped Clinic for my weigh in. I am 20lbs 8oz , or otherwise known as 9.295kg.
When we got home I was soooooo hot, mommy took my temperature and it showed that it was 39.7C.. hot hot hot! I was fine, except for a fever, no other symptoms... I know I am a weird little man! I still had a high fever for the next 24 hours. The pediatrician on call at the hospital was called, and he suggested that I wait until Sunday to be taken into the ER if I still had a high fever. We waited until noon on Sunday, then packed my bag and headed out.

While in the ER I had a pee sample collected, it came back clean and the doctor ordered a chest x-ray to rule out pneumonia. The x-ray came back clean. I was released with the suggestion that I am an odd little duckling! Which we knew already. The doctor figured it was something viral, but I was showing no symptoms for some reason, and I should sleep it off. My fever disappeared that night and no other symptoms ever showed up! We just ended up with a nice 7 hours in the emergency room! At least we had a nice nurse.

Revisiting Ethan

Happy Valentines Day!

It's been an up and down, bumpy road for my oral feedings. However, it seems like my swallowing issues are almost nil. Clinically I look fine when I swallow, it's just making my swallow team at Mac believe this without subjecting me to another icky Barium Swallow Test.

I have started to take my sippy cup again over the past few days. I must mention that we have modified the top so the hole is bigger so my formula just rolls into my mouth, as I don't suck. It seems to be working great! I take between 3-4 ounces of formula orally at meal time. I am trying to work up to a full meal which is 7 ounces. I still take about 3 tablespoons of sweet potato for a morning snack, in the afternoon I am more picky and usually take only 3 infant size spoons of banana. Mommy tricked me and got me to eat apples mixed with bananas yesterday, I ate it... We'll see if I do today!

My Kidsability appointments with my PT and OT will be changed to biweekly. At my last appointment, I had better spine position sitting (I wasn't so Quasimodo). However, I have shoulder hiking! Man, I can't catch a break! Shoulder hiking, is exactly what it sounds like. Instead of my rotator cuff rotating to reach up for an object while the shoulder stays stationary, I raise my shoulder with my arm to reach up, the PT says it's because my arm is so heavy for me. As you guys know my shoulders are so weak. Also it was pointed out that my elbows hyperextend when I put pressure on them, because my arms are so weak. Moreso my left as I have been using my right to spin around in circles on my bum. Talking about that, I was content with that for all of maybe a day, now I am as frustrated as ever that I can't move straight!

On that note, I took my first plunge off the kitchen counter this past weekend. My daddy has been working long hours at the office, so I guess he hasn't seen me at my finest on my bum. He turned around for a few seconds to get my formula, and found me on the ground.... Yes folks we have CERAMIC floors in the kitchen. Mommy came running downstairs once she heard daddy yell OMG! She found me on the floor screaming! I had fallen on my side. Daddy picked me up, mommy moved my arms and legs, and checked my head. Everything looked fine, and I am happy to report that I am very pliable!

My mommy has been trying to create a new friendship with another mommy in our library group. She has a son named Theo and he was born on May 3rd! Which happens to be my Grandpy's birthday. We had our first playdate outside of the group and the mommies hit it off, but I of course wasn't making it so easy! Theo is crawling, I am not. Theo kept coming over to me and grabbing my arm wanting to play. I turned so my back was facing everyone and proceeded to try to ignore this child and played with some toys... Theo would make a loud noise and I would cry at him. Like head poke cry! I was in total distress! Do I sound like anyone we know yet? Has to be uncle Brian. Anyway we will try again despite my antics.

Barkeep please KEEP the other round!

Well, I had just reported on how well I was doing with food on my last post. So this post will be telling you that I am now having a hateful relationship with food.

I should also mention that I had a fever of 101.5 this past Saturday night, but no other symptoms. My fever broke Sunday morning, however for the last couple days I have just wanted my soother and mommy to carry me around. Lucky her! She was always complaining that I never wanted to cuddle.. well she got her wish this week! I had a clinical assessment with my speech therapists, I of course didn't want to eat anything again today. My therapist said that that they often see kids who are just learning to take food by mouth go through phases where they are not feeling 100%, start to reject food, and it takes awhile for them to start accepting it again. So be patient and keep offering food to me, however read my signs and I need to feel in control. So mommy was right! The therapists suggested giving me something called stix or crunchies, apparently kids usually start with these before mastering cheerios because they dissolve faster, so we'll try those, because they have different flavours.

I had my second appointment at Kidsability with my OT and PT. My OT says I am doing well, I have progressed from raking to pinching and palming lower in my hand. I can take objects out and put them back in, bang them together and hold my hands. This is all age appropriate!

My PT has been working on my transitions (getting into sitting, and from sitting to standing, and back down again). She has also been helping me correct my sitting, as I occasionally have a posterior sitting position, so she occasionally has to use a small wedge under my bum. I have been working on knee exercises to strengthen my hip extensors and hopefully that will help me with my four point (on hands and knees) as right now gravity is working against me!
I have learned to pivot on my right arm while sitting so right now all I can do is go around in circles, but it makes me a little happier to be moving a bit!

I had a checkup with my pediatrician this past Monday.
weight: 20.5 lbs
length: 29 inches
My weight is down to the 50th%, which makes everyone happy, this is where I should be because of my low muscle tone. She says I am progressing well, and I am such a cutie!

I have been overly cranky this week, and the only thing that has made me happy is when I found out that Katy Perry and Russell Brand are divorcing... meaning Katy Perry can be mine again!

Barkeep, another round please!

Hello everyone!

There are so many things to update you guys on. I have been neglectful in my duties as host of this blog! I must apologize!

We left off starting with my adventures with carrot purée. Well to say it didn't go well would be an understatement. The result was I did not eat anything orally for a full week!  Mommy freaked and started giving me Cheerios instead, I love them so much! I was then tricked back into eating my oat cereal. From there banana purée and then sweet potato purée, and rice risks. Mommy has been given the okay to introduce a third purée but she's scared!  My sippy cup is going well. I have been taking about 3 ounces in a sitting for the last couple days.

How am I dealing with so much food all the time! My parents have dropped another feeding, so now I get formula 4 times a day and snacks of 2-3 teaspoons of purée in between. I eat sooooo much! I get weighed next week so we'll find out how much of a little big man I am.

I am frequently seen with my fingers in my mouth as I cut my first tooth on January 3rd, and my second came through today! Mommy was hoping that all my teeth would come in at the same time. Silly, silly lady.


My CCAC nurse was discharged this week. No more home visits for me!

Nurse Michelle

My last PT session with Cathy was 3 weeks ago she did the AIMS for my 8th month assessment. I scored between the 25th-50th percentile. She said I was closer to the top of this range! The AIMS if you remember is a scale which is used to assess an infants gross motor skills and the 50% mark is an average kid's score.

I started Kidsability a week later for physio and occupational therapy. I will be going there every Wednesday until the end of February, where I will receive another assessment to evaluate the frequency of my visits. My new therapists are Pam and Laurie (not to be confused with my speech therapist Laurie)
Both were impressed with my progression since the last time they saw me.
They understand my hatred of my tummy, so my exercises will focus more on my knees! Yay!

Today marked another visit to McMaster to meet with Dr. Tarnopolski.  He gave us my Carnitine level results and apparently I'm "saturated". Dr T assessed my progress and was pleased that I was sitting so well, making noise, and showing signs of stranger anxiety.  He gave dad the go ahead to reduce my Carnitine by half and my vitamin C entirely over the next few weeks.

The discussion moved from medications to hypotheses regarding my genetic make up.  Dr. T confirmed that my mom was born with and has the same genetic condition that I do.  Obviously the symptoms were less severe in my mommy.  Dr T surmised that the symptoms could be mitigated by the presence of estrogen or the double X chromosome that mommies have.  It could also be more severe in my case due to an interaction between my mommy and daddy's DNA.  Lots of possibilities!

We finished up with Dr T and cruised down to the cafeteria for a quick lunch.  Mom grabbed some hot water and warmed up my food and dad poured five ounces in my sippy cup.  I was soooooo excited that I polished that off in no time!  Dad filled up another ounce and after a quick break I downed that too!  Yes, you read that right!  I ate six ounces IN MY MOUTH!!!!

Looking forward to more yum yum my tum tum!

Bye for now.