Monday, May 31, 2010

Water Fun Outside!

We have been using the pacer walker as Zoe's outside walker. We notice that the pacer is a bit more work for Zoe. It requires her to bear more weight on her legs than the pony walker does. The pony is great for indoor play because it is so small that Zoe can get right up to things. And Zoe can now be in her walker for hours every day without tiring too much. The problem with using the pony outside is that the wheels are very small and get stuck easily. The pony maker has an outdoor walker called a bronco which is just like the pony but has bigger wheels. Great except we don't have an extra $2,000 to spend on a walker just to use outside! Luckily, our friend Shelby just outgrew her pacer and passed it on to us. Zoe is gaining strength and is able to walk further and further each time we bring it out. Another great thing about the pacer is you can set all four wheels in the forward position so if Zoe is walking along a sidewalk that slopes, she will continue walking straight instead of going into the street. This way, every push she gives propels her forward and therefore she does not get as frustrated as she does if the wheels are unlocked and she ends up spinning in circles.

Yesterday we brought the pacer to a local park. This park recently redid it's fountain area to be wheelchair/walker accessible. Which we didn't give much thought to until yesterday. It was so great to see Zoe walking through and enjoying the water. We didn't have to hold her. She could play just as she wanted to- independently.

Zoe laughing her head off. At this point we decided to take her hearing aids out since she was starting to get pretty wet!

Good thing we took those hearing aids out! Zoe would launch herself into the waterfall and then pull her feet up with a look of ecstasy on her face. The little girl in the background is someone we just met yesterday. She was very sweet and kept following Zoe around. Gavin encouraged Zoe to give her a high five and she looked so happy when Zoe did so. It was a really cute interaction.
Seeing how Zoe can use the pacer to access her outdoor environment (like at this park and at school on the playground) has really reminded me how important equipment is for kids like Zoe. If we were not lucky enough to have a friend pass this on, Zoe would continue missing out on these type of life experiences. It is amazing how much difference equipment can make.

Sunday, May 23, 2010

Ahhhhh Summer Time

Zoe enjoying the grass in the backyard. She signed mom because I snuck up on her with the camera.
It is hard to believe that Zoe used to struggle so much with being outside. The sun, wind, sounds, etc were too over stimulating for her and she would just arch her back and scream. Most of the time now she loves being outside. We are looking forward to do more outdoors this summer. And maybe when we camp this year she can actually go for a hike instead of staying in the tent!

Friday, May 21, 2010

Morning Commute/Conversations with My Zoe

It is amazing how much Zoe is able to communicate with only a few signs. At this point, she only uses about 20 signs consistently. She will mimic other signs if we show them to her, but she only usually uses her familiar 20 spontaneously without us signing first.

Some commutes can be challenging. Physically- carrying Zoe, plus backpack, plus pushing/carrying walker on and off of subway trains can be wearing on my back. Emotionally- listening to people's ignorant comments used to really upset me but now I just ignore them. They think I am being rude when I don't respond but honestly how do I respond politely to comments like "You should wrap his head in a towel so his neck doesn't get damaged" (yesterday's gem of wisdom from random woman on the train- what?! how do I respond to that one!). I try to stick to "if I don't have anything nice to say, better keep my mouth shut!" I want to teach Zoe how to deal with unwanted/ignorant advice since as a person with disabilities she will be getting plenty of that in her lifetime. So I try to remain composed and ignore people. Most of the time I succeed. And some commutes are made much easier by my driving Zoe to school. School is downtown, a five minute walk from the hospital both Gavin and I work at. We tried to find care closer to home so we wouldn't have to commute with Zoe but finding care like she is currently getting was impossible. They are amazing at her school- but I won't go on about that now.

This morning's commute (on subway because Gavin needs the car for grocery shopping and it was physically "easy" since I only had Zoe and one heavy backpack) was really nice. Some commutes, like today, I really enjoy sitting with Zoe and getting a chance to talk with her. After gulping down an entire cup of milk (a big accomplishment if you know Zoe and the fact that she will drink 1-6 ounces on an average day) Zoe was chatting away.

First, she needed me to know that she was all done snuggling with me.

"Mommy" "All Done"

Yes, Zoe I can see you want to be all done sitting on mommy but we are on the train so we have to stay here until we get to our station.

"Mommy" "Zoe wants" "All Done"

Yup kiddo, got your message the first time. But we are on the train and can't get off yet.

"Mommy" "Zoe wants" "All Done" pause "Walk"

Zoe, we don't have your walker on the train so you can't walk right now. Would you like to sit on your own?

"Mommy" "All Done"

This is a good example of how Zoe only signs a few words but can mean different things depending on the situation, her gestures, and her facial expression. As she signs "mommy" and "all done" this time she has a big smile on her face and his arching her back so she can slide off my lap meaning "Yes, I want to see on my own. I am all done sitting on mommy."

We then proceeded to have our usual conversation since Zoe was now sitting next to a sleeping boy:

"Mommy" "Boy" "Sleeping"

Yes Zoe, that boy is sleeping.

"Boy" "Kiss"

No Zoe, we don't kiss strangers on the train.

"Mommy" "Boy" "Sleeping" pause....big smile "Kiss"

Should I be worried- is she implying that it would be ok to kiss this random guy since he is sleeping and may not notice! Instead she reaches out and gently strokes his arm. She looks back at me with a look of triumph and with no signs I can tell she is thinking "Haha, I touched him and you didn't stop me!"

On the second train we stand since we only go a few stops. Zoe begins flinging herself backward while signing "walk."

Yes, I get it, you want to walk and not be stuck on mommy. Your walker is at school, you can walk when we get there.

And as soon as we enter the classroom Zoe has a big grin and is signing walk. I pause to say good morning to Alison (her teacher) and Zoe frantically signs "walk" while swinging her legs back and forth. Ok, kid I get it already!

And of course there was the usual heart felt goodbye flung in my direction as an afterthought as she races through the classroom door:

"Mommy" "All done"

Love you too sweetie. Now wipe those tears from your eyes. I know how hard it is for you to be at school and away from mommy.

She was too busy running after her classmates to appreciate my sarcastic comments but at least I usually get a chuckle from the teachers.

Tuesday, May 18, 2010

A new bath chair, a new playseat, new hearing aids, a new walker and a new haircut

Zoe's new Flip2sit playchair arrived this morning. We tried one out recently (see April 25) but now her very own is here. We are very excited- it is light, highly portable and relatively cheap (only $388, which we got funding for from the patient amenities fund at Sick Kids- Zoe's hospital). Here's a picture

When we put her at the tray table we have it makes her look like a little CEO at her oak desk, which is fair enough as she certainly is the boss of me. And pretty much everybody else she knows too. Check out her new big girl haircut too. We just cut it a day or two ago- it makes her look so grown up!

Hearing aids

Genevieve had mentioned how tiny Zoe's hearing aid are. Here's a picture to show you just how little they are. Check out the cool zebra stripes too!

An outdoor walker

We inherited a Pacer walker from Shelby and Erin- thank you ladies and our love to Jaxson (Shelby's brother). We haven't got any good pictures of it yet but it is bright green and shiny! It is a lot larger the Zoe's pony and while not as good for indoor use (Zoe can't reach her toys very easily) it is has larger wheels that are able to move outdoors, something the Pony doesn't do so well. It also is much more adjustable- the seat and the chest harness can eventually be removed, just leaving the wheeled walking frame for the day when that will be all Zoe needs. So now Zoe has her indoor walker and her outdoor walker. Huge thanks again to Erin for passing this along to us- Zoe is only eligible for a walker every three years so we wouldn't have looked at getting this for a while yet.

Bath seat

The bath seat finally arrived and is getting frequent use. It saves our backs a bit- the next thing we have to do bath wise is some bathroom renovations to replace the current sink with a super big utility sink (almost the size of a small bath tub) to eliminate the need for us to bend over to bathe Zoe. I tell you, that girl loves her baths! We'll also need new tiling and an optional new floor (the current one is really ugly old laminate) that should take us the next little while. Step one- locate a local supplier for the sink.

That's it for news. So now Zoe has two walkers, one playchair, one special needs stroller with two bases (one stroller base and one "spider" base that goes up and down we use in the house for playing in), two regular strollers (one umbrella, one lay down type- she doesn't use either very much any more), her high chair for eating, and her bath chair. Plus her play mats in the living room and her ball pit in our spare room (see May 17, 2009). And her stander (one at home, one at school). And her two corner chairs and adapted easel at school. Plus glasses and now hearing aids. Anything I've forgotten? Now you see why I say she is the boss of us! Such a little girl; so much stuff!

Seriously though, the equipment is all great- it allows Zoe the freedom to both initiate activities and (as independently as possible) engage in them. Genevieve and I were talking last night about the huge difference her walker has made in her life and her development (physically, cognitively and socially). Her glasses made an enormous change to her world, as did her various chairs we have used to allow Zoe, a girl who cannot yet independently sit, the opportunity to play and engage with her toys and other people. We are extremely lucky to live in a society that allows us access to these items (thank you Ontario government and other organizations that support children with disabilities) as well as friends and supports like Zoe's daycare who all help provide the equipment Zoe needs to excel. We are very proud of our little bossy girl, and grateful for all the stuff she needs to help her be that way and develop to the utmost of her abilities. We love you Zoe- keep up the hard work.

"Daddy's a girl"

I recently shaved my beard for the first time in five years (I think I'll grow it back) and Zoe's reaction was quite funny. Zoe really touching loves faces and particularily men with short beards (like mine). She loves them so much that all her male preschool teachers have stopped shaving on days when she is going to be in, making for a very scruffy daycare staff. Anyway, the first time Zoe saw me after I shaved my beard she felt my face and then signed "Daddy" and "girl" over and over again while laughing her head off. So I guess it's very funny that Daddy is a girl!

More sign language news- Zoe has come up with a sign for Alison, one of her main teachers at preschool. She signs "girl" and then smiles- she will frequently talk about her at night after school or when we tell her she is going to school the next day. Alison is thrilled- though Anthony (her other main teacher) is a bit jealous and is working very hard with Zoe to say "boy" for Anthony. We tell him to be patient- the male signs on the top half of the face are harder for Zoe to say then the female signs on the bottom half of the face. Even though this is true I'm not sure it makes him feel better. Oh well, he's at least got the scruffy beard going for him!

Sunday, May 16, 2010

Hearing Aids

We picked up Zoe's trial hearing aids on Thursday. They are so tiny! So far we haven't noticed a huge difference. They are set pretty low and then we will move them up as needed. Zoe did smile when we first turned them on. Then she started frowning at her toy as if she did not like the new way it sounded. We also noticed that she orients toward sound more. For example- we put on music and she looked right at the computer where the sound was coming from. We have these aids on loan for three months so we can really get a sense of whether she needs them or not. They are fairly confident that she will need hearing aids. We just want to be sure we find ones that work well for her. We will go have her tested in a few weeks to see if they need adjusting. So far she is not pulling on them and they stay in place well. Luckily she does not have the fine motor ability to pull them off and put them in her mouth like her friend Whitney loves to!

They are so tiny it is difficult to see them when she is facing forward.

Monday, May 10, 2010

New profile picture

I finally got around to replacing the profile picture- the previous one was from Halloween October 2008. This latest one was taken in March at the Philadelphia Flyers-Toronto Maple Leafs game Genevieve and Zoe took me to when we were visiting friends and family in Philly. Unfortunately (to Gavin at least) Philadelphia won the game- at least Genevieve was happy. Honestly though, with the season Toronto had, it's no wonder they won. Zoe had a good time, though it did get a bit loud at times- rowdy Philly fans, you know.

Sunday, May 9, 2010

Happy Mother's Day!

Spent the morning looking into making the bathroom more accessible. Looking at funding. Options. Etc.

Forced myself to go out to the local pub for some time away and a meal I didn't have to cook. Even better- I got to eat it while it was still hot!

Gavin is working today. Lyn, the respite worker, is here to watch Zoe while I surf the net, fill out insurance forms, bank online, and finally go for some respite time.

Spending the afternoon/evening assessing Zoe:

Checking her heels and palms for dehydration. Listening to her chest with the brand new stethoscope I bought Gavin for his birthday- he couldn't hear with the old one. Counting her heart rate- when it goes above 200 beats per minute it gets very hard to count.

We are day 6 of fevers. Can't remember when this cold started (maybe two weeks ago?). When the cough went to her chest (probably a week ago). She hasn't peed since early this morning. Protocol says 12 hours no urine output- drop an NG tube for feeds.

But she looks really good. Rolling around, playing with her toys. Her nail beds are purple but that isn't so unusual. Her heels are papery, cold, and stay in the triangle shape for over 10 seconds when I test them.

Ok, not a good sign.

But still. I will watch her. And think. And think. And think some more.

This is my mother's day.

But I wouldn't have it any other way. Because I get to be Zoe's mom. And I am really good at it.

And I love her.