Lights, Lights, LIGHTS!!!!

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

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..."

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...

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.