Today was my first appointment at Kidsability in over a month. Unfortunately mommy got sidetracked with my therapy and forgot to take pictures.
Mommy updated Pam and Lori on my progression, they commented on how good I looked and that I looked much older! I think they are trying to get in my good graces before they torture me!
Lori was ecstatic that I am pointing! This apparently was going to be Mommy's homework! But I am already doing it! She was even more impressed that my first dabble in pointing was my mommy's "O" in her "Arizona" shirt and not a hole! Yay for being smart! She had me play with a basket of plastic fruit and did some high reaching with me. She said she didn't notice any shoulder hiking this week. Another win! She says she doesn't have any concerns with my fine motor skills and will continue to monitor me once a month still.
After playing, it was Pam's turn. She said that I got the cross-legged position down pat, and now it's time for me to move on already! She said it's funny because they usually spend so much time with other children trying to get them in this position and they are trying to get me out of it! That means lots of side sitting...... Oh brother!
She tried to get me into side sitting position to play with the pop up animals. However, I am too quick and would shoot my legs out! She can't fool me! Pam finally got me in a leg lock on my hands and knees where I was forced to play. After I did some standing at the learning table... my feet were turned out, so Pam corrected them and I just lost it! I started protesting, until they grabbed a slinky and distracted me. We moved on to mauling mommy. Apparently this is our homework, mommy isn't too happy about this but now I have proof that I am allowed to do it! I am supposed to grab her and go into side sitting to kneeling to standing. I can't wait!
Next it was the stairs... Pam was behind helping me and Mommy was at the top and was calling me to come to her. Can't she see that it's difficult! I am trying but my body just won't let me! I finally got to the top, and Pam let me look out the window at all the buses that were going by. I didn't do much here, so Pam tried to slide me down the ramp.. Oh I hate this feeling! I screamed and protested! I don't want to be here anymore! Take me home! Then it was time to go up! Sorry, I don't understand... You want me to get on my hands and knees and move them simultaneously in a forward propelling motion?!
This took 3 people. Pam was behind me supporting my knees, Lori had her hands behind my arms and mommy was doing her calling to me thing at the top of the ramp. OMG this is scary! I somehow made it up to the top, gave mommy hugs and then I was propelled down the ramp to do it all over again... Three times! At least with the ramp gravity isn't totally against me!
Mommy was given my homework for the next few weeks. (High reaching, ramp crawling, mommy mauling, sit to stands on my stool, side sit playing) I am getting exhausted just thinking about all those things!
Then the bad news came! Pam told us that Kidsability has had to do layoffs, and as she is on the bottom of the list in seniority, she's getting laid off at the end of June.
There are only 2 physios at the Kitchener location and both Pam and the other lady are only part time! So that leaves 1 physiotherapist! AND part time!... something doesn't seem right!
They don't know how everything is going to work just yet, but it's likely that I won't be getting physio over the summer while they are trying to work all of Pam's kids into slots.
Sucks! I really like Pam! Pam said that it's happened twice before to her and she got called back within a few months. Unfortunately money from the government stays the same but expenses go up. All the contract people are gone and a few of the therapist who were at the bottom of senority. She said sometimes they get a large donation and then they get called back until the money runs out again. It's incredibly sad as the wait list for kids to get into therapy is long and then having to get rid of therapists, holy smokes! Sad sad day! I have 2 more sessions with Pam until she is gone :(
Wednesday 30 May 2012
Saturday 26 May 2012
What new tricks are next?
On May 17, I was at my Grandma's getting ready to go swimming when all of a sudden my mommy looks down at me AND.............
Yes folks, you see that correctly... I am isolating my fingers, meaning I am pointing at stuff! The photo is a little blurry because Mommy was so excited and had to capture photographic evidence to show my daddy before I stopped! However, my grandma was smart and gave me my Disney book and my Grandma shouted "Look! He's pointing all over the place!"
My drinking is going well so far. My parents haven't used my tube in just over a month. However, I was just taken to the clinic and I have lost about 13 oz in that month, which is almost a pound. Sooooo, we're not too sure if I'm doing perfect yet, as there were many variables within that month. I will be taken back in 2 weeks for my weigh in to make sure I haven't lost anymore. Please cross your fingers and toes for me that in 2 weeks I weigh a little more! My solids are still a fight, but apparently my feeding team says that it may not seem like it, but I am making great progress with my eating, and that it's almost unheard of at how fast I caught onto the liquid portion of feeding. Apparently it usually takes years for kids to wean off the tube. Right now I will only eat things that are hard and crunchy. Soda crackers, cheerios, infant puffs, popcorn, all bran bars, fries, and sometimes toast with margarine. I am still eating my cheddar cheese, and recently have added Mini-go (which is an infant yogurt) to my palate.
Now that we got that ugly necessity out of the way, I can talk about my newest trick! Sitting up!
Yes folks, I CAN use my arms to do something more than just wave hi/bye!
I was screaming one night for about 5 minutes and no one was coming to get me, so I screamed louder! Finally my dad came in in the dark and tried to pet my head back to sleep. Well he couldn't find my head! He turned on the light and yelled for my mommy to come into my room. My mom burst through the door thinking that something was wrong! And there I was sitting in the middle of my crib crying my eyes out! They didn't know whether to laugh or cry with pride!
Days passed and I sat up in bed a few more times, but not when people were looking! So finally my mommy got smart and sat in my room with camera in hand:
Yes folks, you see that correctly... I am isolating my fingers, meaning I am pointing at stuff! The photo is a little blurry because Mommy was so excited and had to capture photographic evidence to show my daddy before I stopped! However, my grandma was smart and gave me my Disney book and my Grandma shouted "Look! He's pointing all over the place!"
My drinking is going well so far. My parents haven't used my tube in just over a month. However, I was just taken to the clinic and I have lost about 13 oz in that month, which is almost a pound. Sooooo, we're not too sure if I'm doing perfect yet, as there were many variables within that month. I will be taken back in 2 weeks for my weigh in to make sure I haven't lost anymore. Please cross your fingers and toes for me that in 2 weeks I weigh a little more! My solids are still a fight, but apparently my feeding team says that it may not seem like it, but I am making great progress with my eating, and that it's almost unheard of at how fast I caught onto the liquid portion of feeding. Apparently it usually takes years for kids to wean off the tube. Right now I will only eat things that are hard and crunchy. Soda crackers, cheerios, infant puffs, popcorn, all bran bars, fries, and sometimes toast with margarine. I am still eating my cheddar cheese, and recently have added Mini-go (which is an infant yogurt) to my palate. Now that we got that ugly necessity out of the way, I can talk about my newest trick! Sitting up!
Yes folks, I CAN use my arms to do something more than just wave hi/bye!
I was screaming one night for about 5 minutes and no one was coming to get me, so I screamed louder! Finally my dad came in in the dark and tried to pet my head back to sleep. Well he couldn't find my head! He turned on the light and yelled for my mommy to come into my room. My mom burst through the door thinking that something was wrong! And there I was sitting in the middle of my crib crying my eyes out! They didn't know whether to laugh or cry with pride!
Days passed and I sat up in bed a few more times, but not when people were looking! So finally my mommy got smart and sat in my room with camera in hand:
It's my Party and I'll........
Happy Birthday to me!
In case you didn't have it marked on your calendars, I turned one on April 23rd, 2012. Since that was a Monday, and in the height of tax season (a time during which I become the child of a single parent), my party was deferred until Saturday May 12th. But oh what a party it was.
My mommy spent hours planning and toiling over what to do, how to decorate, what to get for food, where to hold it? She's a super planner! We ended up holding it at the Zehrs grocery store near our house in the upstairs community room. Mommy said it was better to do it there since there was more room to move around and socialize. The only catch was we had to buy all the food we used from Zehrs. Guess they gotta make some money somehow :)
In preparation for the grand event, mommy wanted me to have a surprise cake just for me. Not just any cake though, this was going to be a 3D, stand-up, Special Agent Oso Cake! If you don't know who I'm talking about, he's the unique stuffed bear appearing on the Disney Jr. Channel who helps kids solve problems. Anyway, she found a special bear tin and contracted daddy to do the icing! After 5 hours of hard work, they made two sweet Special Agent Oso bear cakes for the party. While daddy was busy icing, mommy plugged away making dozens of cupcakes of different colours and flavors. They worked well past midnight to get it all ready for my party!
As party-time approached, mommy and Grandma Philp started loading the car with food, decorations, photos, drinks, and posters we had printed. Meanwhile, daddy was compiling music to listen to and accumulating all the digital photos we had of me onto his laptop to setup and display for all to see. Mommy left to start setting up and I stayed home with Daddy. Uncle Jan and uncle Jay showed up at our house to help daddy with the last few items and we were on our way to the party too.
We arrived just before our guests were slated to show when we realized that daddy left my feeding chair and diaper bag at home!?! OOPS...
Another trip and a few more minutes passed and daddy returned with all my gear. The party began!
Lots of family and friends came out to wish me well. I was passed around for plenty of photo ops got to show off my bum scooting abilities to lots of folks who hadn't seen me in awhile. Everyone ate lots of food and I even sat nicely to take a sippy, despite all the activity happening around me! I didn't get a lot of sleep before the party so for awhile there it was looking like my batteries were going to give out, but just THEN... I saw them... my OSO cakes! They were AWESOME! I was rejuvenated.
Everyone gathered round my cakes (which now also included a full size slab cake with my name on it) and sang me a nice group rendition of "happy birth". Camera flashes were twinkling around me and smiles were lighting the scene when without warning, daddy grabbed my hand and shoved it in the cake!!! "Woah! back off mister... you have your own paws to mess with." I stopped, what to do.. make a fuss? laugh it off? I chose the high road and played it cool, "oh daddy, you're such a card. Just wait till you try to pick me up!" I played with my cake and spread the mess all over the table. It was fun and messy!
As the party died down, we sat around the table with a few of mommy's friends from work chatting while Grandma Reimer and Uncle John helped clean up the left-overs and pack up my presents. We packed the car full of food a gifts and de-partied (haha, see what I did there?)
A huge thanks to those who could attend and for all the wonderful gifts! It was a real pleasure to see you all.
Until next time!
In case you didn't have it marked on your calendars, I turned one on April 23rd, 2012. Since that was a Monday, and in the height of tax season (a time during which I become the child of a single parent), my party was deferred until Saturday May 12th. But oh what a party it was.
My mommy spent hours planning and toiling over what to do, how to decorate, what to get for food, where to hold it? She's a super planner! We ended up holding it at the Zehrs grocery store near our house in the upstairs community room. Mommy said it was better to do it there since there was more room to move around and socialize. The only catch was we had to buy all the food we used from Zehrs. Guess they gotta make some money somehow :)
 |
| My twin Oso cakes |
As party-time approached, mommy and Grandma Philp started loading the car with food, decorations, photos, drinks, and posters we had printed. Meanwhile, daddy was compiling music to listen to and accumulating all the digital photos we had of me onto his laptop to setup and display for all to see. Mommy left to start setting up and I stayed home with Daddy. Uncle Jan and uncle Jay showed up at our house to help daddy with the last few items and we were on our way to the party too.
We arrived just before our guests were slated to show when we realized that daddy left my feeding chair and diaper bag at home!?! OOPS...
Another trip and a few more minutes passed and daddy returned with all my gear. The party began!
Lots of family and friends came out to wish me well. I was passed around for plenty of photo ops got to show off my bum scooting abilities to lots of folks who hadn't seen me in awhile. Everyone ate lots of food and I even sat nicely to take a sippy, despite all the activity happening around me! I didn't get a lot of sleep before the party so for awhile there it was looking like my batteries were going to give out, but just THEN... I saw them... my OSO cakes! They were AWESOME! I was rejuvenated.
Everyone gathered round my cakes (which now also included a full size slab cake with my name on it) and sang me a nice group rendition of "happy birth". Camera flashes were twinkling around me and smiles were lighting the scene when without warning, daddy grabbed my hand and shoved it in the cake!!! "Woah! back off mister... you have your own paws to mess with." I stopped, what to do.. make a fuss? laugh it off? I chose the high road and played it cool, "oh daddy, you're such a card. Just wait till you try to pick me up!" I played with my cake and spread the mess all over the table. It was fun and messy!As the party died down, we sat around the table with a few of mommy's friends from work chatting while Grandma Reimer and Uncle John helped clean up the left-overs and pack up my presents. We packed the car full of food a gifts and de-partied (haha, see what I did there?)
A huge thanks to those who could attend and for all the wonderful gifts! It was a real pleasure to see you all.
Until next time!
 |
Thursday 3 May 2012
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...
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!
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!
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!
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