Little Miss Evie

Wow My Mommy let a Year go by

2011-02-24T21:20:00.003-05:00

Ok, so a whole year has passed since my Mom last posted on here but let me tell you it was worth the wait. We knew we had to post big after such a long time so here it is. WALKING!!!! Can you believe it? I am so proud of myself. For the first few times I would start laughing I thought it was so funny. Now I walk everywhere around the house and preschool! Here is a video from my first week of walking. ***Please ignore my mom's annoying voice

I hope you all had a great year and I promise to try to post more regularly on here. We had a pretty good year. I had my adenoids out but still am dealing with a pretty bad case of sleep apnea. We are looking at some solutions for that. Also we start Jr. Kindergarten this year and Mommy and Daddy are super excited.
Promise to update you more soon,
Evie

New walker

2010-02-21T21:28:00.003-05:00

A few weeks ago I received my brand new walker. I just love it!!! I am not so great at steering it at the moment so mommy got them to order a bar in the back to help me steer when needed (like on a toddler's bike.) I was so excited to walk in to my class with it and all of the kids were really interested with it. I am the only kid with special needs in my class and all my classmates are so great!!

Valentine's Day

2010-02-21T21:08:00.002-05:00

Hello Everyone. I have not been able to update for quite a long time. We have been very busy this year so far. I have started preschool and was very excited to participate in the Valentine's Day celebration. We made our Valentine's this year because my Mommy would like me to understand crafts. At school I do not participate willingly at craft time and it is something we would really like to see improve.

Also, this year was my very first haircut at a real big girl salon!! My hair was getting so long and I really was not enjoying the process of combing it out everyday (really... why my Mom insisted on it, I have no idea?) I wish I could post a super cute picture of me there. I was sitting in a cute pink hummer salon chair and zebra stripe cape. However.... my behavior was a little ... temper-mental. Mommy does have pictures of the occasion, I am just crying in most of them. (Mommy said the hairdresser was a saint and really earner her money that day) Hopefully I will come to enjoy the moment in the future.
Lastly, This Valentine's day was also my Mommy and Daddy's 5th wedding anniversary. As usual, they kept it simple and just ate a delicious heart shaped pizza for diner. They started this tradition the first year I was born and was in the hospital that year's Valentine's day and have ordered one every year since. Simple yet Yummy!!

Computer Issues

2010-01-29T18:56:00.002-05:00

Hello Everyone in Blogland,

We are having some computer issues. Hopefully we will get them solved soon because we have lots of pictures and news to tell, such as my first day of nursery school and my first big girl haircut!!!

Lots of Love,
Eve

Discovery Museum,Holidays, and 1st day of Nursery School

2010-01-05T18:19:00.006-05:00

Hello Everyone. I sure hope you all had a happy Holiday season. WOW... it's been a while since I wrote on here. I guess my promise to post weekly wasn't kept. I am truly sorry about that but with all of the holiday excitement the days seemed to fly by.

I was lucky enough to travel to Tennessee to see my Aage and Opa right before Christmas. I had so much fun there and I even got to go visit the Children's Discovery Museum. My Mom and Dad are so happy that I am now showing more interest in discovering my environment and how things work with in it.

We spent Christmas at home this year and had all of family over for dinner. It was loud and crazy and went by super fast. I was so fortunate to have 4 of my cousins to help me open all my presents. I received many amazing toys and cute outfits ... and most importantly new BOOKS, my favorite.

New Years was another holiday day at my house as we had my Aunts, Uncles and all my cousins over to celebrate Mommy and Auntie Robins 30th birthday on New Year's Eve.

Lastly, I would like to tell you that I believe 2010 will definitely be a GREAT year and full of many firsts that I am so excited for. On January 5th it was my first day of Preschool. It was really fun and I met lots of kids who are really great.

Happy New Year!!!

PS: Here are some pictures of me at the Discovery Museum:

Really cool pipes that made music.

My FAVORITE part of the museum. This was a touch screen that let you touch a color and then touch the part of the picture you wanted to color. I stayed at this station for a half hour before Daddy could drag me away.

the finished product.

I also liked this harp. I enjoyed feeling the vibrations after I strummed the strings.

The little kitchen was a perfect size and of course, just like home, I went straight for the fridge. I just live to get Mommy to open the fridge at home so I can see the mysterious light inside. Here I could do it all by myself!!

I was playing with this train set but I refused to get out of my stroller because I am weary of new places. ( I'm just a silly girl like that)

WATER!! These boats looked very fun. What a great place I wish we had one near our house.

Lights, Lights, LIGHTS!!!!

2009-11-20T21:56:00.005-05:00

We have been having a beautiful November so far. The weather has been quite mild and because of this today Mommy and my Grandma brought me to the Festival of Lights in Niagara falls. It was so nice that we were able to get out and walk around a bit. I was in my Light Loving Heaven! Folks.... if you kiddos are like me and like lights, this is the place for you! On lookers probably thought I was crazy because I was stimming, giggling and moving myself like crazy on all the lighted goodness.

I could have stayed and watched this Ferris-wheel all day. Grandma and Mommy really wanted to see what the view would be like from up there but they didn't think I would sit still in my seat for the whole ride. Maybe next year...

They had beautiful horse-drawn carriages that were all lit up. This picture really does not do it justice because Mommy had to use the flash.

Here I am so excited... hands going like crazy.

We all liked this light the best. It was flashing so very fast. Here is Mommy and I posing away... Tyra Banks would be so disappointed in our skills.

Way back ... a long time ago ... when Grandma was little she lived far up north and her Daddy used to make her go hunting. She was apperantly quite the sharp shooter. (Although most of the time, being the true animal lover that she is, she would miss on purpose.)

This game was right up her alley, testing her sharp shooting skills without anything becoming hurt. She did quite well and a crowd stopped to watch.

Lastly, a pit stop. Grandma popped in and I was mesmerized like a true Canadian girl!! What a fun (and bright) evening.

Halloween 2009

2009-11-11T21:32:00.003-05:00

Lately, I have been having some minor tantrums about what I would like to wear in the morning. On the day this picture was taken my Mommy was putting away my clean clothes and I through a HUGE fit until I was allowed to wear the 2 shirts I wanted. Mommy thought my selection was pretty funny. What do you guys think? (Yep... that's a polka dot shirt with a yellow tank top over it)

We had another great Halloween this year. I was very luck to have my 2 cousins to go out with this year.

My cousin Owen with his friend Tallon (both as Anakin Skywalker - if this spelling is wrong... all you hardcore Star Wars fans will have to forgive me) walking in the Halloween Parade.

My cousin Olivia as a devil (quite fitting actually) and me as Piglet.

I went around with them all night and because I don't eat candy I was given this pretty cool light-up stick with a witch on it from my Grandma instead.

P.S. (Raised right hand) I promise to update this blog at weekly for the rest of the year! I know I've been a slacker lately...

"It's Going To Be That Kind of Season..."

2009-10-22T19:44:00.004-04:00

Those are the exact words my pediatrician said to Mommy today about how I have the flu... again. "It's going to be that kind of season." Mommy, Daddy and I all have it. However, I'm doing just great with it. My O2 saturation is good and even though I have a very runny nose, cough, fever ect... I feel fantastic and am my giggly little self. Mommy and Daddy however, are two very big babies (in my opinion) who are living on chicken noodle soup and tea. Also, the Doctor would like me to go to see my ENT because she believes he may recommend we put tubes in my ears.

As you can see from the picture above, I am loving some serious "rough house" time with Daddy . Being upside-down is my favorite and I will ask for it all the time. I do this by half flipping myself in your lap. Just beware, even if you don't know me well I'll still try, which may somewhat scare you at first..and leave Mommy to explain why I'm doing a half somersault in your lap and giggling while trying to kick my feet in your face. Aren't we kiddos fun!

Wow...Two Months Passed...

2009-10-06T14:59:00.002-04:00

Can you believe that it has been 2 months since my last post!! I have no excuse for this other than Mommy and I have been just taking it easy and having fun at home. Here is an update of what has been happening:

Health :

I has pneumonia in September but it wasn't too bad. I did not have to sleep over at the hospital. This month it will be 13 months since I last had a hospital stay!!
I am still having my random crying episodes. We still don't know why this is happening but the Doctor thinks it is behavior based. Mommy does not and neither does some of my therapists who have seen me when I am having an episode. Unfortunately the Doctor has not seen them so she can't figure it out.

Gross Motor:

I am using my walker more and more. I really enjoy it and I will go get it all by myself and walk around the house!!
I am trying to learn to crawl up and down stairs. For some reason this REALLY scares me. I cry every time Mommy or my PT makes me do this. At the suggestion of our Deafblind Specialist we have now put yellow tape on the edge of each stair to help me with depth perception. It has helped a bit.

Communication:

Although I have always been able to informally communicate what I want, my "formal" communication skills have been challenged. Right now we try the total communication approach and just recently I am starting to use some sign independently.(Not just repetative) So far I use Daddy, Mommy, Light, All done, and my new sign is MUSIC. I know...it's quite funny that one of my first signs is music when I am profoundly deaf in my left ear and Moderate to severely deaf in my right ear?
We are looking in to the possibility of getting a BAHA for my right ear. My bone conduction tests only show a little improvement over the normal test but because of my ear shape I have constant feedback. We are hoping that a BAHA will help us avoid this.
I will poit to my hearing aid if the battery is dead. This is huge to Mommy after months and months of fighting just for me to keep it in.
I have also be saying "mum mum mum"!!!!! We are not sure if this is for mommy but I only say it when I crawl to her so we think so!!

Phew..that's quite a bit of catching up!! This weekend is Thanksgiving and we are going to Ottawa(which is 6hours away) to see my Daddy's family. I am really excited.

I also have been very curious about what Mommy is doing in the kitchen. She has to be high alert because I don't quite understand what HOT is yet. Don't worry..Daddy was right behind me in this photo.

Shiny pots and bright oven lights get me into some trouble!

Lastly, a short little video of me watching the "Shadow"part of Bear in the Big Blue House. I just think it is hilarious!!! Have a good weekend everyone!

Physio

2009-08-06T11:08:00.004-04:00

From the very start of my first physiotherapy appointment I screamed from start to finish. No matter what I did there, I was completely unhappy and unmotivated. I will do the same thing at home and on my own terms with no argument but not at the my appointments and not when being made to do it!! After almost 2 years of this Mommy and our PT have become very frustrated. About 3 weeks ago we introduced Picture Cards into the mix (thanks to our wonderful Speech therapist) and have added tactile supplements to them as needed. Mommy also started doing this at home.

Well.... we just got back from out appointment today and it was a great SUCCESS!! I used the walker (we are starting with this walker until I feel more secure to use the one that goes behind me...I'm not sure of the proper name) and rode the tricycle without crying. I actually even enjoyed it and looked around at all the murals on the wall. Mommy and my PT ( Who is fabulous by the way!!) are so excited with this progress:

Using the walker

Picture card my Mommy made using Paint.net free program

(Thanks to Naill Brown's www.deafblindresources.org website for the instructions)

And here is a video of me riding the tricycle....Sorry about the lopsided post. I didn't know how to fix it.

Possible Hacker?

2009-08-05T18:12:00.003-04:00

Hmmm.... Mommy and I came home to find this guilty looking friend of mine.

She claims she was just researching the newest dog treats and checking out pictures of my Auntie Danielle's new puppy but I think something fishy is going on here... I will have to keep a close eye on her from now on.

** It has been 3 days now on antibiotics any my random crying has stopped. Mommy is very happy that I am feeling better. She thinks it was an ear infection (I get them quite a bit) but can't know for sure.

Birthday, Parker, and Quick Update

2009-08-03T19:50:00.002-04:00

Hello everyone. I am very sorry for the lack of updates. The first reason (and most upsetting) is that the hard drive on our laptop broke and we had to wait to get it back. Sadly, Mommy was not very smart and did not back up a lot of pictures that were on there so we lost quite a few pictures and videos. Also all our pictures of baby Evan. Mommy has definitely learned her lesson!!

The second reason for the delay was that Mommy and Daddy went to the CHARGE Conference. It was WONDERFUL!!! They met so many families and cannot wait until 2011 for the next one. Their only regret was that they did not take me, so I am also excited to get to attend the next conference!

The last reason for the delay was that we were busy celebrating my 2nd birthday. Yep..that's right I am now 2 years old!! My Aunts and Uncles came over this weekend to celebrate and it was fun. Check out how cute my cousin Parker is while playing with Sally and blowing bubbles!! I spent most of the day hanging out inside because I'm not feeling quite right and I keep having weird bouts of random crying? However Parker was very nice to hand me a toy or remote control (a favorite of mine) when ever he noticed me empty handed.

Thank goodness for NO-Spill bubbles.

Isn't he super cute?

Mommy and Daddy attempted to make me taste icing. I didn't cry but I wasn't begging for seconds either...

Ahhhh.... fast asleep after a long day!! My Mommy is not sure what is wrong with me lately but something is not quite right. Several times throughout the day (and night) I just start crying for no reason. My regular pediatrician is away for a few weeks so Mommy took me to another Doctor. He could not see anything causing the crying episodes but it is very unlike me to cry ALL day. We have a prescription of antibiotic at the pharmacy on hold so I think Mommy and Daddy will give it a try just in case. Many times other Dr's have said I am fine but when we finally get to go to the pediatrician she says it's an ear infection...so maybe this time it is the same. Wish me luck

PS: I, like many other CHARGErs, have trouble sleeping though the night and LOVE to have little night parties. We are considering getting a weighted blanket. If anyone reading this has used one could you please let us know how it work for you. Thanks :)

Summer Fun

2009-07-09T20:08:00.004-04:00

I have found the BEST thing!!! It is shiny, blows cool air on my face when it's hot out, and if you run your fingers over it you hear a really loud noise and it feels funny. Mommy said it's called an air vent. I think it's a fun summer toy.

Lately I have really been playing well outside. Before I would cry for sometime but now I am enjoying the nice weather. The picture above is my reaction to seeing bubbles. It's a new favorite around here.

I even will ride my fire truck on the patio. Although I don't go near the grass. It really scares me.

There is soooo much stuff to see out here. I can't believe I was so scared at first. I am glad it's only July!

Look!!!! I am even smiling and giggling. Mommy LOVES my little chipmunk smile!

All Smiles

2009-06-25T20:39:00.002-04:00

Hello everyone. This is a picture that Daddy sent to Mommy when she was in the hospital. She would look at it several times a day and it would always make her laugh. Although I giggle and smile all the time, it is rare to get a picture of me smiling. In fact this is the only one!!
Things are getting back to "normal" around here (whatever that is?) and my Aage has gone home to Tennessee. Thank you for being such a great help!!! I don't have very much to post put here are a few highlights of the past few weeks:

-Congrats to Auntie Danielle and Uncle Brad on there new baby boy Peyton :)
-Mommy and Daddy have decided to attend the CHARGE Conference in Chicago this July. They originally did not think that they would be able to go but now are very excited!!
-Today was my last day of Stepping Stones. Yep I graduated!!!

Thank you all for your wonderful messages.

Evan Henry Ali

2009-06-02T07:23:00.002-04:00

On May 30th 2009 Evan Henry Ali was born at 27 weeks + 3 days gestation. He passed peacefully 6 hours later due to lung and heart complications.

Thank you to everyone for there love and support during these past few trying months.

Mommy is fine and resting (and is finally home thank goodness).

Drumstick Tales

2009-05-23T20:13:00.002-04:00

Hello Everybody!!! This week I had many adventures. I went to stay in Toronto with my Daddy and Aage at a hotel down the street from Mommy's hospital. I am a little sick now and sadly.... I lost my hearing aid. Uuugh!!! I know, Mommy is really sad. It is strange how quiet I have become just after 1 week.

Now I did not take this adventure in the big city alone. I had my trusty Drumstick with me. I now take it everywhere. ( I actually have 2 but I like this one) Mommy thinks it is super funny that I take it everywhere. Some kids have Teddys, some have drumsticks.

Here is me playing on the floor with it.

I take it in my stroller for all my walks

Daddy says in this picture I am signing Mommy while holding it. Mommy thinks that is wishful thinking.

I am now back in the comfort of my own home but far far away from my Mommy. Mommy is sooooooo sad. It has taken her a few tries to write this because she keeps crying. She has never been away from me for so long.

Mommy is doing ok. Daddy and her are hoping for the best, but the best means at least 4+ more weeks in the hospital. Maybe Daddy and I can rent small place in Toronto if it gets to be too long. I will keep you posted.

Out of Commision

2009-05-16T19:24:00.002-04:00

Hello Folks,
Sorry for the lack of posts. Mommy's water has broke (25 weeks) and she has to spend the rest of her pregnancy at the hospital. We are trying to work out all of the details for visits and childcare. Right now it looks as if Daddy and Aage are renting a suite in Toronto down the street from Mommy's hospital. The baby also has pulmonary stenosis (sic?) so he will need that dealt with when he delivers...however the cardiologist can't fix it until at least 30-32 weeks at best. Were not sure if labour can hold off that long but miracles do happen.

I will update soon.
Lots of love,
Evie...

Hair 101

2009-04-30T07:42:00.003-04:00

As you may already know, I have a crazy head of hair. I absolutely hate it when my Mommy combs it. It gets very tangled and there is a really rough patch in the back that matts all up as soon as i lie down. It has caused many tears for me and my Mommy. Well.... after many trail and errors we now have a pretty good system of combing it out:

First: My hair gets shampooed, then I get to use mommy's big girl curly hair conditioner, rinse, then I get conditioned again, before rinsing we comb it out with a really wide tooth comb while still covered in conditioner and very wet. Then we are all done. I get my hair patted dry after the tub and Voila!!

Big..... Crazy....

Tangle Free... Curly Hair (With much less tears!!)

Fun in the Shade

2009-04-28T19:38:00.003-04:00

I have been a sick girl lately. I have a sinus infection and an inner ear infection. Mommy says I am one big runny nose. I had a pretty quiet weekend so Mommy decided that we would play outside on Monday. It was really nice out and she wanted to get some yard work done. Of course, I don't like the sun very much so we had some fun in the shade instead.

Now normally I do not like the outside very much, however, after a few moments of crying i really started to like it out here. Mommy could even hear me giggling to myself while she was working in the garden. (Although..... I refused to put my feet on the blanket the whole time?)

Mommy even gave me a little pedicure because I like the polish on her toes so much. I would look at her toes curiously...then look at mine.... then hers... then mine... yep they are the same colour. I had to make sure!!!

Baby Update: Well we are still taking it week by week. For all those who are unaware, we are having a baby boy who will be called Evan Henry. Mommy has very low fluid and is only 23 weeks today so she has been told he will probably be coming quite soon. We are hoping for at least 28 weeks. His heart is still not better from the Twin to Twin Transfusion..we were told that this would take time to get better. So hopefully he can stay put for a while!!! Good news is that his bladder is much better!!!

First Craft and New Pets

2009-04-23T16:57:00.004-04:00

My First Fridge Art

Today I started a new preschool program called Stepping Stones. The goal of this program is for kids aged 18-36 months who for some reason or another need a transition to preschool. They get to meet new friends and interact with other children while the parents go to another room and have tea and coffee and talk or listen to guest speakers. My mommy was a little scared to leave me with preschool volunteers who have never met me and don't know my little "quirks" yet. The program is for only 2 hours but Mommy was still nervous. When she went to the parent room she then realized that all the parents were in the same boat, some were quite upset because its hard to walk away especially when your child is nervous as well. All the kids did great!!!! They have circle time, snack time (which I actually sat and watched the other kids eat...but hey...I actually sat there which is progress) and we got to do craft time. My mommy was so happy to get this lovely craft project from me today!!!!! Of course it is red..my favorite colour!!

Also here are my new pets that I got for Easter. Their names are Rufus and Magie. They live in my bedroom and I feed them every morning and night.

Bird Kingdom

2009-04-18T20:08:00.002-04:00

On Thursday Mommy and I were bored so we took Grandma to Bird Kingdom. Mommy was excited for me to see tons of brightly coloured birds. Unfortunately it wasn't that great there. Although, there were these large pink birds I really liked:

These were the only birds I would pay any attention to. Grandma, however, really loves birds so she had a very good time taking over 100 pictures of them. I think she would like an aviary in her house.

An upside of the day was a last minute lunch at the Rainforest Cafe. I thought it was so cool there. (Mommy never goes because she thinks the food is blah!) I especially loved when the thunder storm came and there was tons of lightening. I wasn't even scared of the animals!!

Happy 50th Birthday Aage

2009-03-27T19:52:00.003-04:00

I just wanted to take this moment to say a BIG Happy Birthday to my Aage. Lots of hugs and big SLOPPY kisses. I miss you and can't wait until you come visit again.

Love,

Your Little Princess Evie

PS: The house still smells of your yummy curry :)

Olivia's 6th Birthday

2009-03-24T17:57:00.004-04:00

On Sunday March 22nd my cousin Olivia had us to her house for her 6th birthday party. We had a fabulous time!!. I even played with another baby for the very first time. Until now I never paid any attention to other kiddos or babies....It really worried my Mommy...but at the party I spotted a little baby and crawled right up to her to see who she was and what she was playing with. My Mommy was so happy!!!! I even noticed she was wearing socks (which I DO NOT like to wear) I decided to try to pull them off for her :) She'll thank me later!!

Update on the Twins: I am sad to say that not only did the one twin have a bladder obstruction that was very large (LUTO), but they also have developed Twin to Twin Transfusion. This is a complication that occurs in identical twin pregnancies. Unfortunately we could not save the one twin(B) and we now must wait to see how the other Twin will do. Currently because of the TTTS he also has developed a large bladder and fetal hydrops of the heart. Mommy had surgery last week and hopefully that will help Twin A get better. We were also told that after surgery most babies are born 11 weeks later. WHOA!!! that will only make mommy 28 weeks so we are hoping that she will go a little longer :)

Thank you to Aage, Caren, Auntie Alea, Big Daddy aka:my grandpa (yes.. Mommy hates that name), Auntie Robin, Auntie Danie, the BEST nurse Mary, Granmma Zoo, and everyone else who helped this past few weeks.

Update on the Twins

2009-03-02T09:39:00.002-05:00

Hello Everyone,

My mommy went for another ultrasound and we wanted to post the pictures for our friends and family to see. We now know that they are identical twin boys. They believe that Twin B has a Lower Urinary Track Obstruction (LUTO). You can see how very large the bladder is in the picture below.

The doctors are not sure what the outcome will be and we may have to place a temporary shunt in the baby to allow for the kidneys to grow, then if possible Twin B will have a surgery when born to fix the obstruction. We hope this is possible, if not, we do not know what will happen. Twin A is doing well and they are both growing well. Right now my mommy is hoping for the best as she cannot imagine more NICU, more Doctor's, more scary times. She is quite lucky that I am such a good girl and I make her laugh all the time!! Sometimes I start giggling sooo much for no reason and this really makes her feel better.

Ride-On Car

2009-02-19T07:56:00.002-05:00

Hello Everyone,

This is a picture of me and my new car. I am getting very good at riding back and forth with it. When I first got it all I did was cry. Now I can move it forward and backwards all by myself!!

In other news...... My mommy is having TWINS. Yep you read that right!!! Two babies. I think she is still in shock and is trying to figure out how she is going to get any sleep with twins plus a little cutie like me around the house. She went for her ultrasound yesterday and the radiologist told her that one of the twins had a VERY enlarged bladder and will have to have more indepth ultrasound quite soon to see what is going on. So right now we are waiting to talk with the Doctor to see what this all means.

Curious in the Kitchen

2009-01-23T09:38:00.002-05:00

Lately, I have become quite the curious little lady. I have started to explore more areas around the house. My favorite new discovery is the microwave. Every time it is in use I crawl into the kitchen to get a better look at it. Because of this I am now turning into a great little stander. I pull myself up and try to get real close. My mommy hopes that this new found curiosity will motivate me to start walking along things like the couch or the walls. I think she might be right!! I'm getting stronger and my balance is improving every day!

Things I Love

2009-01-19T08:24:00.003-05:00

I really love all my books!!

The picture of the red cat and bird is my favorite!!

This is my ladybug. It create tons of stars all over my room at night. Going to sleep wouldn't be the same without it.

My rubber duckie. My Mommy was so excited when she found this. It lights up with all different colours when it is placed in a warm bath. My favorite bath toy!

This toy is soooo fun! I just love when the bear dances. It is the first toy I started to stand with just so I could see that silly bear dance.

Quick Update

2009-01-14T18:36:00.005-05:00

Sorry for the lack of posts lately. I just wanted to let everyone know I'm feeling better. After a week of the flu, I'm back to my regular self and acting silly while rolling and tumbling on the couch and chair.
Love,
Evie

Tennessee Aquarium

2009-01-03T21:45:00.003-05:00

While we were in Tennessee we visited the Tennessee Aquarium. When we first got there my Mommy was a little worried because I was not taking an interest in anything very much. However, once I realized that each wall had really cool stuff in it, I started looking at each large tank to see what was in there. My favorite was the jelly fish. The whole place was awesome.

Some very pretty sea horses

Penguins!!

I was a little scared of the penguins because they swam up to me so quickly.

The Jelly Fish were so beautiful. I could stare at them all day.

Very Cool!!!!

Happy New Year

2009-01-03T21:20:00.004-05:00

Hello everyone. I hope you all had a happy holiday season. I am very sorry for the delay in posting but I have just arrived home from my trip to Chattanooga TN. I had went there to visit my Aage for Christmas. We drove there on Christmas day and I was very well behaved for the 12.5 hour drive.

Here are some Christmas pictures:

At Santa's train in Signal Mountain TN

Meeting the Jack in the Box

Showing off my new Christmas PJ's from Aage

Acting silly with my Christmas toys

Happy New Year,

Evie

Couch Potato

2008-12-18T14:31:00.005-05:00

"Don't I look so innocent"

For those who are not aware of this, I LOVE to sit or lay on the couch. I am a bona fide couch potato. I am always trying to stand up against it and then try to get someone to give in and lift me up onto it. These tactics may include looking very cute in someone's direction, or if if all else fails, crying loudly until someone gives in.

Well, the other day my Mommy went to get my meal ready and guess what she saw when she walked back into the living room?? Yep.... Me on the couch with my buddy Sally!!! (Mommy knew it was too quiet in the other room) Now I can climb up there all by myself. The big problem is I can not get down and I like to roll and play all over it, so Mommy can't let me out of her sight now.

Breaking Some Sensory Barriers

2008-12-04T19:41:00.003-05:00

Let me give you some background on my crawling. So far I am doing really good at crawling around my living room. I will go and explore all around. But... I absolutely have refused to cross over into my kitchen. My kitchen has ceramic tile that is somewhat rough (like slate). I do not like the feel of this on my hands. My Mommy and Daddy keep trying to get me to cross over but I refuse. I would just lay on the floor and cry.

Well, for some reason today I just did it. My mommy walked in to the kitchen and I followed her. As you would expect, it took my Mommy by surprise. It's a good thing her camera was sitting on the kitchen table to capture the moment!!

PROOF..... I am Canadian

2008-12-04T19:32:00.002-05:00

The other day my Daddy turned on the Montreal game and guess what?? I crawled right up close to the TV so I could watch. I was in awe.

There you go folks. I am definitely Canadian!! Although, some Leafs fans I know may not love the selection of which team it seems I like. (you guys know who you are!)

BURRRR....

2008-11-17T11:43:00.004-05:00

Ok folks, please allow me to vent a little this morning....

Today the temperature is 2C. It is supposed to snow this afternoon. Because of this, my Mommy thought it would be a good idea to take me to the park before we could not go anymore. I did not think this was such a great idea!!

First, it was still sunny so I had to wear my sunglasses. BOO!!! I still don't love to wear them. Secondly, my Mommy thinks this hat was super cute. I did not. When she bought the hat it fit but now, with all my hair, it's a little small.

This trip to the park only lasted about 10 minutes and then I had enough! I think I'm going to hibernate inside this winter!

Morning Surprise!!

2008-11-15T09:24:00.007-05:00

This morning, my Mommy woke up to a really strange sound, me yelling. I wasn't crying or upset, just babbling like normal only really, REALLY loud. My Mommy ran in my room to see what was going on and this is what she saw:

"Good Morning Mommy...look what I can do!!"

"Oh great.... mommy's taking a photo while I have bed-head"

She couldn't believe it!!! She has been waiting forever to walk into my room and have me standing there waiting to greet her "Good morning." Today it happened! I was just "yelling" at her to come and see me. When my mommy saw me she started screaming for my Daddy to wake up and come quick, who had a small heart attack until he saw why Mommy was yelling for him. It was all very exciting!!!

Optometrist Visit

2008-11-06T17:54:00.005-05:00

Sorry about the delay in posting. I'll try to catch you all up. A few weeks ago I went and visited an Optometrist at the University of Waterloo. I must say that he is the best Doctor I have been to in regards to explaining diagnosis'. When we arrived he actually met us at the reception. (Yes...he was actually waiting there when we arrived).

Their oculo-visual assessment revealed that I have functional vision, and my fine detail vision has developed as per the normal range.

My left eye is favored for most tasks and my tracking abilities appear to be more accurate in upward and left gazes.

I do fixate on objects with the central part of my vision, indicating that the most sensitive part of my vision has developed normally so far. I do only view with one eye at a time and mostly favor looking at things with my left eye. My left eye will occasionally turn inward when my right eye views, and my right eye will occasionally turn upward when my left eye views.

Refraction revealed that I am nearsighted in both eyes. The refractive error was 2.50D. This means the clearest vision for me is within 40cm from my eyes. But, I do not need glasses at this time, they will re-evaluate me at 3 years old.

Lastly, they tested me using the Teller Acuity Cards for my visual acuity (fine detail). I was told the normal range at my age is 20/270 to 20/70. My measurements were 20/90 with both eye's viewing. Which is great!!!!

Happy Halloween

2008-11-01T15:27:00.005-04:00

Can you believe I slept through the WHOLE parade

Our neighbour's cool witch

Walking in the leaves at Grandma's house

My outfit said "Hair-Wolf." The picture on it looks like my regular hairdo

My Cousin Oliva (the cat) at the parade.

My cousin Owen as Darth Vader

Last night was my second Halloween. We went to the town of Ridgeway where my Grandma, my Auntie and my cousin's live to watch the Halloween parade. Every Halloween the kids at the public school walk downtown to show off their great costumes to everyone. It is so fun. People come and give out candy. My mommy loves to go and told me that she had so much fun in the parade when she was little.

I would love to tell you it was the best Halloween parade I've ever been to but......I slept the whole time!!!!!

After the parade I went to my grandma's house and walked around in the leaves. My Mommy thought it would be nice to get some fall pictures of me lying in the leaves but I was not cooperating. You see I am quite sensory defensive about touching leaves, grass, or pretty much anything I think feels weird.

Later we went home and handed out candy to the trick or treaters. I had fun because of our neighbours had some pretty cool lights and decorations.

I can't wait until next year!!!!!

First Day of Swimming Class

2008-10-20T13:10:00.003-04:00

I really liked the rubber duckie

My Mommy was trying to teach me to splash but I didn't like it too much

No matter what I do or where I go. My fingers are all ways a source of entertainment!!

Today was my very first day of swimming class. I think I did pretty good. I was a little nervous of letting go of my mommy but then the swimming instructor gave us some fun duckies to play with. I did go under the water ONCE. Trust me......once was enough!!!! The class was only 1/2 hour long and I think that is long enough for me. I started to get a little bored at the end. The instructor wants us to blow bubbles in the water with our mouths and kick with our legs but I think I'll just take me time and enjoy the water by relaxing in my Mommy's arms.

Thanksgiving

2008-10-20T12:40:00.005-04:00

Hello Everyone,

Thanksgiving has come and gone. Here are some pictures of my fun weekend:

Me and my Daddy

My Auntie Alea tickling me. :)

My Aage and Opa came all the way from Tennessee to visit me

I really wanted to see what Opa had in that pretty glass but he said I was way too young!

I really miss everyone. Mommy says Halloween is just around the corner and I'm pretty excited

Blog Makeover

2008-09-29T13:11:00.003-04:00

Hi folks,

I gave my blog a little makeover. Let me know if you like it! In addition to the new background, I also added some links of other CHARGErs websites that I love to read and I got a great idea from a couple of sites to add some music. I added some of the songs that my mommy sings to me and some songs we dance to. If you wish to turn it off just scroll down to the bottom of the page.

Love Evie

Computer Discovery

2008-09-28T15:45:00.005-04:00

When Daddy and Mommy were not looking I decided to check out this "computer thing" they are always on. It is really cool. I can see why they love this.

Oh Oh...Busted!!!! "Hey... I was playing a game"

As you can see my shoulder is getting better so, conveniently, I can get try to get on this couch to get my game back!!!

"Where did it go? I know it's up here!!"

"Ok I guess a cuddle is just as good"

Shoulder Woes

2008-09-26T13:22:00.005-04:00

Clapping other people's hands together is now my new favorite pastime!!

Hello Everyone!!!

I have been slacking in posting on here but I wanted to give you a quick update. I injured my shoulder 2 weeks ago. No one is quite sure how it happened but I wouldn't crawl or pull myself up to a stand. I love walking with mommy holding on to me and I couldn't do that either. It has gotten a little better. I am now crawling around again but I still won't pull myself up or walk with mommy. We had a x-ray taken but it showed nothing so for now it's a mystery??

I start swimming class on Oct. 20. I don't know if my mom is more scared of me in the water or her in a bathing suit post baby :)

I also am getting an FM system which is great!!! For those who are unaware of what that does, it allows mommy to wear a mic on her and it goes directly into my hearing aid no matter where she is in the house. Because of this it helps with blocking out background noises when she is talking to me. My audiologist thinks this will be great for me.

Catch Me if You Can!!!

2008-09-15T18:19:00.003-04:00

I'm getting faster and faster!!! I'm actually up off my belly now so the next step is hands an knees!!!!

I'm such a Mommy's girl now that I cry when she walks away. OK....OK... I know all kiddos go through a phase like that at some point but my Mommy thinks it is quite funny because for months I hated to even be picked up. Now I cry if you put me down. Yep.. I sure am full of surprises.

Finally... A New Post!

2008-09-06T07:58:00.002-04:00

OK... so it's been a while. In my defence I've been pretty sick...and my mom has been pretty sick of me getting sick. Throughout all of the hospital stays and Dr's appointments I have been making strides in my Gross motor skills. Currently I am trying to crawl on my hands and knees. I can do 4 in a row without falling over. Also my physiotherapist is working on kneeling with me and now I do it at home all of the time. These are pictures with me at my fun table at home and of me kneeling at the Children's Center. I love playing up on my table but I can't quite figure out how to pull myself up on it....or down.

Me and My Daddy

2008-08-18T19:46:00.004-04:00

My Mommy thinks this picture is funny

I really love my Daddy

Lately I have been working really hard at being happy about wearing my sunglasses. Just the other day I met my Daddy outside when he came home from work while wearing them. I think it's cool how Daddy wears them on top of his head sometimes so Mommy thought I should give it a try!!! What do you guys think?? Does this look work for me????

Funny Games

2008-08-15T17:23:00.003-04:00

Me behaving myself

I can now sit using my arms for support for 10 mins

Well I haven't had much time to post lately. My mommy has went back to work part-time AND the Olympics are on. It is Olympic madness here at the Ali household. I like the games so much I decided to make up one of my own. I call it "Fall Backward and Hope Mommy Catches Me". My Mommy is working very hard at getting me to sit without using my arms for support. She creates all sorts of ways for me to practice this (my longest time is 5 seconds). But with all this working I get a little bored so I decided to throw myself back just like I did when I was small (well....smaller than I am now). I just fly backwards and my mommy catches me and I smile and giggle, she tries to sit me up again....and back I go!!! I think this is so much fun and even though my Mommy is not very happy about it she can't help but laugh.

Talk to you soon,

Evie

2008-08-07T20:28:00.005-04:00

Let me give you some background on my hearing. I am profoundly deaf in my left ear and severely deaf in my right ear. I do wear a hearing aid in my right ear but I have never shown any signs of hearing anything. I don't ever turn toward loud noises. My intervener rang a cow bell, chimes honked a horn...nothing. But recently my Mom thinks maybe, just maybe something is there. Today she decided to bang a spoon on this measuring cup. Normally I don't sit for long. You really have to keep me interested to get me to sit over 5 mins. The only time I did it was with my physio therapist and I was really interested in this flashing mickey mouse light.

Well.....I loved my mommy banging the spoon. Every time she stopped I would cry because I wanted more. So mommy thought could this just be that I liked watching the spoon hit the cup OR can I actually hear it?? Mommy then banged them off the floor (just incase I just liked vibrations) when I wasn't looking....I turned..EUREKA!!! Could I actually be hearing this?? I hope so.

***Warning*** This video contains me with a really runny nose. As you may know my nose always runs but my mommy can't bang the cup, record the video and wipe the nose all at the same time. Sorry....She wiped it as soon as she stopped recording.

Moving Faster

2008-08-07T20:03:00.003-04:00

Well...I am getting faster by the day!!! Soon I'll be crawling on my hands and knees I just know it!!! I do try sometimes but when I need to get to someone fast I still pull myself along.

Milestone Status

2008-07-31T17:03:00.005-04:00

Now that I'm officially a year old I thought I should mention where I'm at with my gross motor milestones. It make take me longer than others but I am such a determined little girl!!!

Hold my head up..............6 months
Roll back to tummy...........7.5 months
Roll over both ways..........8 months
Grab my toes(mommy's fave)...9 months
Stand while lean on couch....9 months
Creeping/Commando crawl......11 months
Sitting up on own............presently sits supported by my own arms 2 min+
Walk while holding on........presently only random awkward steps
Crawling.....................Presently can crawl 3 paces then creeps(just today!!)

My mommy and Daddy are so proud of me. I'll keep you all posted :)

1st Birthday Picture Post

2008-07-29T18:56:00.002-04:00

I can't believe it has been a whole year already!!! My birthday weekend was so much fun. On Friday I went to visit my friend Victoria. She also has Charge Syndrome and is super cute. Her mommy also helps my mommy a lot with all kinds of information.
On Saturday my cousin Owen camew for a sleepover and so did Aunt Danni, Uncle Brad and my cousin Parker. On Sunday and Monday I had many visitors to celebrate.
Thank you everyone for making my first birthday wonderful!!!

Getting Better at Sitting

2008-07-19T07:25:00.002-04:00

Nothing new has been happening around here lately. I've been a pretty sick kiddo. I am starting to feel better. How do you like my new toy. I love sitting with it but I don't like when my mommy makes me stand with it. She is hoping that this toy will help me start to walk a little. Oh.. guess what else? I am officially creeping!! Yep!!! ME. I still move pretty slow but I getting quicker every day. My mommy and daddy are so excited but think it is weird that they finally have to baby proof.

Photo Post from Alea and Brents Wedding

2008-07-13T16:42:00.003-04:00

My grandfather, Auntie Alea, Aage (my grandma), and Daddy

Me and my Great Grandma

My Opa and Aage

I fell asleep before dinner even started

Well.... things have settled down around here now. My Opa and Aage have gone home and everyone is back from my Auntie and Unkie's wedding in Perth.

My Funny Funny Hands

2008-06-30T10:14:00.003-04:00

I just think my hands are hilarious!!! They are the funniest things. They keep me entertained for hours. The other day I was laughing at them for 20 minutes. I laughed so loud, it was the loudest my mommy ever heard me.

Last Day at "Snack Attack"

2008-06-24T11:39:00.003-04:00

Today was my last day at my feeding group and it was the best!! We got to play with potatoes, carrots, peas, yogurt, ketchup, cookies, and even honey garlic sauce. I was a mess!! It is such a fun place to go. I am going to really miss it. My mommy said that she is not going to miss the clean up.

Aidan

2008-06-24T11:29:00.003-04:00

Isn't he cute?

This weekend I got to play with my cousin Aiden. Isn't he handsome? He is a few weeks older than me and he has some really fun toys. I get to go to his birthday party in a few weeks and I'm so excited!! I can't believe that we are going to be 1 year old soon.

My Best Friend

2008-06-20T15:33:00.003-04:00

Me and my best friend

It has been a pretty quiet week around here. Lately I have just been sitting around with my best friend Sally. I really love her.... unless she is licking me.

Playing with my Cousins

2008-06-17T15:49:00.004-04:00

This weekend my daddy went to the Dominican Republic for my Auntie Alea and Unkie Brent's wedding so mommy and I went to My Auntie Robin's house to play. She has a nice shady backyard so I love to hang out there. My cousin Olivia was in her little pool so I thought I'd try swimming for the first time in my super cute bathing suit. At first I liked it.....but then I realized the water was freezing!!!! Why on earth does Olivia like this so much!! As you can tell by the picture I was not impressed. Even my cousin Owen wouldn't go in it was so cold. I decided to spend the rest of the day under a shady tree. I'll have to wait until a really warm day the next time.

Starting to Sit Better

2008-06-13T20:48:00.003-04:00

Today was REALLY hot. It was sooooo hot I was sweating like crazy. I had big plans for today that included relaxing, playing with my dolly, relax, maybe nap, and then relax some more. My mommy had some other ideas.

My Mommy thought we should work on sitting today. I definitely did not enjoy this extra workout on such a hot day but I did my very best and do you know what? It paid off!!! I sat all by myself!!! I can only sit there for about 30 seconds each time but I'm getting there.

Music to Mommy and Daddy's Ears

2008-06-10T20:47:00.003-04:00

Well...... it took 10 months but guess what??? I can GIGGLE!!!! My mommy almost cried the first time she heard me. She thought she'd never hear such a lovely sound. Sorry about the video. My mom has no video taking talent.

Very Busy Day

2008-06-10T20:37:00.002-04:00

Today was very busy for me and my Mommy. We had some running around to do today and I had my feeding group "Snack Attack" and a PT. My Mommy couldn't take pictures of the feeding group today because she forgot the camera. She did take a picture of my in my new special chair from Physiotherapy today. This chair is supposed to help me like to sit better. I am doing GREAT at standing and holding on to things but I really hate sitting. My legs are strong but my upper body has low tone. After my PT session I am always sooooo sweaty!! Hilda really gives me a workout.

Trip to Zooz

2008-06-08T07:34:00.004-04:00

Yesterday was my first trip to Zooz. I met a parrot who I really liked and a turkey. Unfortunately I had trouble seeing most of the animals even when my Mommy and Daddy took me out of the stroller.

Mommy thought it would be funny to take a picture of me in a hippo's mouth. I did not think this was so funny!

Thank you to my mommy's work for the tickets. It was a fun time.

Bad Hair Day

2008-06-05T20:56:00.003-04:00

Let's just get it out of the way.....I hate to admit it but I am having a bad hair day. No, bad hair life. It doesn't matter how many times a day my mommy combs my hair it always ends up looking like it does in this video. So please don't judge me. I can't help it. I come from a long line of crazy hair people.

As for this video, I wanted to show you that I am officially on my way to crawling. Yes, it will be a long journey but I have started to balance myself better and I can see the light at the end of the tunnel. In this video I see my dolly and I just can't quite figure out how to get it. I have already learned that I can reach my arm out to grab the toy but as soon as I do that I fall over. So now I lay on my belly and think, think, think...

A Perfect Cloudy Day

2008-06-05T11:47:00.003-04:00

I DO NOT like the sun very much. PERIOD. This is because I can not blink. It helps me beat all my friends in staring contests but as for going outside on a nice sunny day...forget it!! I do have sunglasses but I do not like them very much. Well today just happened to be a perfect cloudy day so my mommy decided to take me to the park. I got to try out the swing there for the very first time. I really was not sure what to make of it so for the first few minutes I did what I always do when I'm in an uncomfortable situation, I stared at my fingers, my favorite. After a while I decided to look around and then you know what??? I fell asleep. It turns out swinging is very relaxing.

Once mommy took me out I woke up again and I tried out the slide. I was not amused!! Mommy said we will come back later and try them both out again. Maybe I'll like the slide better when I'm older.

Hugs and Kisses,

Evie

"Snack Attack"

2008-06-03T13:25:00.004-04:00

Today was the first day of my feeding group called "Snack Attack." It was lots of fun!!! Myself and four other kids that don't like to eat so much were allowed to get really messy with all types of food. My favorite was icing. We also played with Jello and Cheerios and used fun straws and Twizzlers in foil trays to make HUGE messes. I was the youngest and the only girl there but don't worry I fit right in with the messy boys (maybe even messier than them).

The group is supposed to encourage kids to play with food and explore different textures. Gradually our parents will put food on our face and in our mouth. I did this on my own today though. Hopefully by the end of the month I might be willing to try some on a spoon. I don't like spoons very much but today I did like licking the icing off my fingers and putting it all over my face and hair.

These pictures are from the first few minutes of the group. I was definitely covered head to toe by the end. We were colouring our paper with white icing. I had trouble seeing the white icing on the white paper but once it was on my hands I was quite curious about it. Mommy said she will take more pictures next week.

Discovery of the Mop

2008-06-02T17:16:00.004-04:00

So apparently my mommy doesn't clean as often as she should because I was completely fascinated by this new thing I discovered called "the mop." Who knew cleaning could be so fun!!! I don't know why mommy complains about it all the time. Now I see why my dog Sally like to chase it.

The Journey So Far

2008-06-02T16:53:00.007-04:00

I was born on July 28, 2007. I was immediately transferred to Mount Sinai Hospital in Toronto an soon after diagnosed with CHARGE Syndrome. I have many congenital abnormalities including: Hypoplastic cochlea in both ears, hypoplastic cochlear nerves ( I am profoundly deaf in my left ear and moderate to severely deaf in my right ear), absent semi-circular canals in both ears, small brain stem, small and displaced facial nerves, bilateral colobomas that encompass the optic nerve, and heart abnormalities (VSD,PDA).