School update

Hello everyone!

Just thought I'd give you an update on how I am fairing at daycare, which mommy calls "my school".

When I was warned that I would get sick more often, I laughed it off and said I'm ready! I've had a cold for the past 2 weeks! Oh these babies and their snot sharing!

I have 3 ladies that take care of me in the room: Shelby, Betty and Mila.They tell mommy and daddy that I am adjusting well! Napping still seems to be my greatest issue, if only because I'm sick and I keep coughing myself awake. This past Friday, Mommy finally was able to pick me up.

When Mommy got there I was the last kid there. Mommy was thinking "What kind of job do these parents have that can pick kids up early!". Oh well, I was happy that I got some quiet time with my School ladies.

Betty and Mila told mommy that I had my best day there yet! Betty said that I seemed to be interested in this toddler car thing that you walk in. So she had put me in and I was tooting all over the pace happy that I was able to move by myself, well as by myself as being in a car could let me. I was the most vocal they have seen  me yet. Mommy wasn't sure what that meant as I am usually sounding up a storm. She's hoping I start my vowels and consonants soon!

The ladies told mommy they were impressed that I clean up my toys after myself. Mommy said that she is making sure she teaches me young so I won't be like daddy! Mila said that she usually does not like carrying kids around because she has a bad back, but she loves carrying me everywhere just to touch my hair and talk to me!

My days with Grandma are quiet and are a nice break from the commotion at school. Grandma has been teaching me to get down using my knees. So instead of flopping back down on my bum I now fall down on my knees. I now am frequently seen with bruises on my knees, but at least it's a safer way to get down. I just don't seem to get "squatting" yet.

Mike and Bev Moorhouse surprised me last weekend with a sand turtle! I am excited for daddy to put it together so I can finally try it out! Pictures will follow in a later post.

I got my second hair cut tonight! Check me out!

On the medical side of things there's not too much to report. My cold has made it difficult for me to drink my sippys, but I hear this happens to the "normals" too.  However, I'm being judged for weight every 3 weeks, so there's some added pressure for me to keep eating. I report to my pediatrician in a couple of weeks for my 16 month check up. Should be fun!

Day Care = Torture Chamber?

A few weeks ago I, Ethan's mommy was offered a job. It just happened to be the same day the second daycare called and asked if we still needed a spot. And that's where Ethan's new adventure began!

 A few Friday's ago Mommy and Daddy took me on a tour of this place called Day Care. They told me that I would be shipped here three times a week. I didn't know what it was supposed to be, but it looked like it moonlights as a torture chamber. I could tell mommy was unsure of this place. It looked a wee bit intimidating!

My cellmates are 18m-3 years. However most of them are on the upper scale as not many new toddlers get placed. If you've done your math, you will say "Hang on a moment! Ethan is 15 months!" So, not only am I starting 3 months early, I am also delayed in my gross motor skills by about 4 months.

When we went on our tour I saw things that I forever want to unsee! My cellmates are monsterous! They were all running around with a full set of sharp teeth, yelling in some foreign language that only they can understand. If it wasn't for the over taking fear of these cellmates I would have been more scared for seeing what was outside. A giant concrete slab! I can just feel the concrete rip my bum and feet while I bum scoot during the 1 HOUR we have to be outside. ME Ethan... OUTSIDE... The outside, where there is sun, heat, concrete, grass... everything that I hate in this world! That's what I thought, until we had a tour of "the kitchen". This is were the cellmates go to eat. THIS is where the torture happens... I just know it.

In this "kitchen" the monsters eat around a table on CHAIRS! Mommy asked if they had highchairs and the lady just started at her like mommy had just said a bad word.... YIKES! I guess not.
I was shown the food menu.  Cesar salad, Felafel, pasta salad, Ham, RAW vegetables... What are these people cannibals! RAW vegetables... seriously! Even if I do decide by some complete wave of insanity put these things in my mouth, how am I supposed to chew these things with 5 teeth?

And then that was that. Mommy made arrangements for my Grandma to look after me the other 2 days. And with the understanding that if I regressed by ANY measure, Mommy agreed to try me out at this place.

Mommy ordered me a school backpack

I started last Monday.

Ethan and Mommy's first day of Daycare and Work

Mommy has been training all week so she has been unable to drop me off or pick me up at daycare, my care has been left with Daddy. Daddy really had to step up to the plate this week! He's had to get me ready each morning and pick me up in the evening. We've been lucky that this daycare lets me stay til 6pm! I bring my own snacks and sippys each day.. as you know I have a hate on with food.

So far Daddy has been informed that I have been transitioning well. However, no one has asked me so I don't know how I feel about it all yet! So far the only hard transition has been napping. The naps happen on COTS! Yes, COTS! No cribs.... I have been doing my best, however so far the days at daycare I've only been able to sleep for an hour. You would think that by the time I get home that I would be exhausted, but NOPE I am so excited to share with Mommy and Daddy about daycare that I end up wired! I just wait for the next day when it's Grandma time and I catch up on my sleep!

 In addition to my new Day Care adventures. I learned my first "sign" last Tuesday.  If you remember way back when when mommy was trying to teach me the sign for "more" and "book", then she gave up doing it all the time because I just didn't seem to get it. Well I now sign "more". Well, close enough. I tap my palm for more!

What else... Mommy had been teaching me how to climb up the stairs. So now I can do it, with help of course, I'm not that strong yet in my legs to push myself up yet. But once my legs get stronger I have the basics to climb right up the stairs!

The last bit of information is that I was weighed at the clinic on Friday. Daddy and I went to see my dietician, Lynn at the hospital. I was weighed in at 20lbs 8oz. Which is a 2 oz increase from 3 weeks ago.  Lynn is happy with my weight progress considering my increase of physical activity. I am sitting at the 5th percentile for weight. Lynn gave Daddy some measurement guides for how much food a 1-3 year old should be taking and it's scarey! These babies must be eating all the time.

14 month Assessment

Hello All,

Ethan here!

Friday the 13th marked the day of my 14 month assessment.  Dave, our friend from infant and child development joined us for some one on one play time to see what I was getting up to these days.  Dave is a nice man who carries a HUGE sack of toys, kind of like Santa Clause, only with more educational value and less white beard.  The assessment took about forty-five minutes and we played with blocks, pegs, crayons, balls, and I especially took new interest in banging on a cymbal.  No I'm not going to turn around and be Mozart tomorrow but I can see I like to hear things make noise!   On the other hand, we also discovered that I have no love for crayons.  I mean none!  Let's hope I change my mind soon as I think Mommy fancies me to be quite the little artist!

The assessment went well in all areas with the exception of my speech and gross motor skills.  Checkout my scorecard! The dots in the white area indicate areas in which I'm exhibiting normal development.  The ones in the black area show were I need a lot of work.  Anything in the shaded middle would be an area that's on the fringe.  Darn that gross motor skills mark!  My communication is very good from a receptive point of view but since I'm not actively using any words yet I'm not scoring as high as I could otherwise.











In other news, Mommy enjoyed a visit with uncle Jay and uncle Jan this week.  She dropped me off with Grandma and Grandpa Philp and drove on down to Brantford.  While she was away, Grandma played in the pool with me for a whole hour!  I'm getting really good at hurling myself off the sides of the pool into Grandma's arms!  After some pool time, a long nap, and some "let's make a mess of the living room floor" time, I was ready to go home.  Oh No! Mommy's not back from Brantford and she has my car seat!!

In a quick pinch, Daddy was able to swing by after work with the JEEP!  There was a big boy seat that has been waiting for a big boy to use it at Grandma and Grandpees house.   Daddy and Grandpa worked together to install it the back and voila! I was ready for the open road, the wind in my hair and the sun on my face!

No roof, no doors, no problem! I love riding in the Jeep!

Daddy was nice and kept me off the highway and at the end of the journey we made it home safe and sound!

Kate's Kause Playground

This is a post to let everyone know that once in a while I do have a bit of Infant Fun!

Today Mommy, Me, Sarah and Theo went to a new playground that just opened in Elmira. It's called Kate's Kause Playground. It was built with the idea of being assessable and inclusive.

"Kate’s Kause is an organization inspired by Kate Meissner, a sweet little two-year-old from Elmira who has Angelman Syndrome. It is a 100% charitable organization committed to Angelman Syndrome awareness and fundraising for inclusive community projects. For a full year now, they’ve been raising money to build a playground in Elmira that is entertaining and accessible for children of all abilities. Elmira doesn’t currently have any facilities for disabled children to use, and parents of disabled children must drive to Guelph just to be able to let their children use a swing or experience a slide without it affecting their hearing equipment or other medical peripherals.

It is because of this little girl that I can play at this awesome playground! And what fun we had!

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.

Spider Man and Mount Everest

Today was my second last appointment with Pam. She was extra sad today as time spent with me is quickly coming to an end. I made a deal with mommy that I should show Pam my most awesome stuff. And I delivered.

I crawled up the ramp 4 times all by myself! Pam was holding the creases of my knees to make sure I didn't fall backward, but I did all the forward propelling motion all by myself. Pam told me last time that I should be practicing crawling up a ramp because there's less gravity weight coming down on me. She was right it's much easier to figure this out on a ramp than on a flat surface! Put me on a flat surface and I get all angry.

Mommy took a video of the second time I crawled up. By the 4th time I was just like Alain Robert! Mommy tells me he's the French Spider Man (A fast climber!)

 

My session ended off with some standing holding on to some dryer pipe and putting some felt balls in a hole. I was distracted by the large pipe and my need to make sure I put all the balls away that I didn't notice that no one was hanging on to me and I was doing it all by myself. I am not used to holding onto something that is not stable (like a person or couch!).

The only comment Pam made was that my ankles are weak, so mommy has to go and get big boy shoes for me so I can practice standing with shoes on to try to gain more confidence in cruising.
All in all Pam was extremely proud of me today!

Weigh In and Wedding

Friday, the day arrived for my weigh in. Grandma told Mommy that she was going to come with us to make sure Mommy didn't "lose it" if I got a bad result. Ha, so much faith in me!

We checked in to the Children's Outpatient Clinic at Grand River Hospital, and waited for Lynn, my dietician to arrive. As we were waiting, Patty, one of the nurses came over to talk to me. I haven't seen her in a few months, and it was nice to "talk" to her again without her having a giant needle in hand to stab my head!

Lynn arrived and showed us to a room where this was going to happen! Mommy undressed me while Lynn retrieved the scale. I was placed on the scale for scrutiny! I absolutely hate this part, and began screaming at the top of my lungs as soon as I sat down. My result rang in and I had gained 3 oz. SOMEHOW. Mommy and Grandma were extremely surprised because I have been eating LESS than before my last weigh in. How could this be? I guess stranger things have happened. It was agreed that my formula concentration should change a bit, so now it's 3.5 scoops of formula to make 6 oz instead of just 3 scoops. So over the day I will get 72 more calories. Lynn said just a little could make all the difference. So we'll try this and my next weigh in has been scheduled for the end of June. Upon leaving, Patty made a joke about how I likely knew I was being judged today and saved up all my poo just for today! Hmmm...


As a reward Mommy decided to take me to McDonalds, you see because I love FRIES! Yum Yum! I even tried a few little pieces of Grandma's chicken nuggets. I didn't seem to mind as long as I was given the side to touch with the crunchy batter!

McDonalds

After McDonalds my Mommy had to get everything ready for us to go to a wedding this weekend. My Aunt Heather (Mommy has been friends with her since Grade 7) was getting married on Saturday to Sean and Mommy was the Maid of Honour. Or I guess in this case MATRON.. Mommy doesn't like this word as it makes her sound old. So MAID it is! Daddy was going to be my keeper at the wedding. HELP ME!

We got to Newmarket Friday evening and we were lucky enough to stay with friends that flew in from Vancouver! Thank you Mr. and Mrs. Rudkin x2! ;)

I was put to bed, although I had plans of my own and did not fall alseep until 3:30am. I was playing on the bed learning new tricks! The morning came early has Mommy had to be at Heather's hotel room at 7:30am for hair and makeup application. I was lucky she was nice enough not to yell at me in the morning.

Wedding day came and I got to see my Auntie get married FINALLY! I would've been a lot happier but it was hot outside and I desperately needed a nap. I was happy to hear that the Bride's sister, Louise had come by in the morning and turned on the air conditioning in the hall to something resembling freezer cool! I guess it takes a Mommy to know these things!

While pictures were being taken Mommy informed Daddy that he should take me for a drive in the air conditioned car where I'd likely fall asleep, then he could bring my car seat into the hall if I was still sleeping.

This next part angers Mommy, so I am going to say this as a whisper.....
Mommy came out of the hall at one point and saw Daddy talking to a group of people while my car seat was beside him. Remember Saturday, it was 35 with the humid x... Why was I sitting there in the hot hot sun? Mommy took a peak at me and saw that I was sleeping, covered in a heat rash and my cheeks were red red. Mommy calmly yelled at Daddy and said she was taking me into the hall. She put me beside the head table where I finished the rest of my nap in the air conditioned hall. *sigh*

Dinner began and I was so irritable. I did not want to sit down or be held. Remember, I was being held all day and hadn't had the chance to scoot anywhere. I was lucky I had Tabitha (1 of the bridesmaids), she had an iphone and downloaded Katy Perry. I sat content on mommy's lap with Tabitha's iphone in front of my watching Katy Perry sing and dance oblivious to what was actually going on around me! I was soooo happy in Katy Perryland!

Daddy delivered his speech on Mommy's behalf and people thought he was funny. This is why she didn't make Daddy feel worse about leaving me to char like a piece of bacon outside in the heat! He would have made her speak in front of 90 people and she would have died.

Unfortunately as the evening rolled on, my Katy Perry left me and I was unhappy again and needed to go to bed, so we had to make it an earlier night than we had anticipated. But all in all I enjoyed my time at my first wedding!

Sunday we got back into town and my rash covered my legs, feet, arms, ears and bum. I am not bothered by it but it looks really bumpy! On top of my heat rash, I am sooooooooooooo CONSTIPATED! I haven't pooped in 5 days! I keep trying and I grunt and hunch over.. I even tried side sitting but nothing was working. Daddy gave me a warm bath to ease my pimples in my bum (TMI I know but hey!) while mommy pumped my tummy full of water... The only blessing for this stupid PEGasaurous! At 8pm I finally had a poo. It hurt so bad but it was finally out. It was glorious! It was the size of my foot. Yuck!

Last night I finally had a nice uninterrupted sleep. My first in a week.