A new way to roll

Sophie has had a whirlwind of appointments at the seating clinic to finalize all the decisions for her new wheelchair. 

I saw it for the first time in the colour we ordered and with all the seating inserts added, this chair has a personality and it suits my girl to a tee.  We have now chosen all the upholstery colours and we will be picking it up tomorrow for a 3 week trial before it gets upholstered to make sure it fits Sophie perfectly.  There is a lot of customization in this chair so we want to get it right. 

It is funny but whenever I see this chair I envision Rizzo, from the movie Grease.  Rizzo was a girl with an attitude, she was feisty but had a heart of gold.  She had some struggles but overcame them.  Now who does that sound like?   I think Sophie needs a pink lady scarf to go with her new wheels ;)

sneak peak...

The dynamic back and footplate are a component that I was drawn to and requested to be included.  It is a new way of thinking about how people with severe CP and dystonia, move. Sophie has a strong extensor thrust because of her dystonia and the dynamic back and footplate work with that, they don't try to stop the movements that she makes. 

For the same reasons, I vowed to never have Sophie's feet tied down, she is a mover and a wiggler and I want her to be able to do that.  Sophie often moves certain ways to anchor her body so that she can perform a task.  So the dynamic footplate lets her push her feet but the plate moves with her so she doesn't push her whole body up, but she gets to have the movement she needs.  Same with her back, she can push but she won't push her bum down out of the seat position she should be in.
So, so smart.

The new chair is a beast though and I will have to get used to getting it in and out of our car.  We don't have an accessible van so it is going to take me a long time to get it assembled and taken apart each time we go somewhere.  I am sure I will figure something out pretty quickly.

I am very excited for my big girl to have her new set of wheels.  One more thing off the to do list!

Clean up in aisle 1,2,3,4 & 5

The last five days have not been good here.  The stomach bug came knockin and it took over the house.  I have never been so violently ill with a stomach bug before in my life.

Y.U.C.K.

First Jason, but not too bad.  Then me, bad.  Sophie a little, not too bad.  Then Lucas, bad.

Lucas on the couch last night with the bowl. My little guy has been a trooper.
I have now done 1,438 loads of laundry and disinfected the bathroom to a clean so clean you could eat off the floor (ewww, no, I wouldn't do that).  You just do what you gotta do, right moms? 

I hope we are in the land of the living soon, we are *this* close to a fun week ahead.  However the land of the living this weekend means me with a steam cleaner in Lucas' room.  Good times.

A Playdate

Today Sophie was invited for a playdate with a little girl named Julie who we have known for a while now.  Sophie and Julie are the same age and they have been in the same music program and summer camp together.  Being invited for a playdate seems like such a standard thing for an almost 6 year old girl, it is a regular thing for Lucas to go to playdates and hang out with friends.  But it isn't something that happens very often for Sophie so it felt really special for her to get that too.  I don't need to feel like Sophie is typical, but it was a great feeling to know that Sophie is meeting friends that she can socialize and play with.   Sophie is a social butterfly and loves being with other kids.

Both girls are non-verbal and non-mobile, so you might be thinking what exactly could they do together?  Well they showed us pretty quickly.  Sophie was very interested in all of Julie's toys and Julie was happy to give little demonstrations on how to work everything.  It was very cute. 

We laid the girls down on the rug to play and before you knew it Sophie had rolled herself closer to Julie to watch what she was doing.  They both gave smiles for the bouncing tigger and the fusion ball and Sophie tried her best to get close to the piano that Julie was playing on.  They were figuring out everything going on around them and it was fun watching them interact in their own ways.

We asked them if they wanted to do some crafting and we got them all set up.  Cheri (Julie's mom) is a crafty mom too and she had some great stuff for the girls to check out.  They did some finger painting with awesome girly colours and they chose little mirrors to add to their masterpieces.  The mirrors were a brilliant addition, Sophie LOVES mirrors so this will be a fun piece to have up on the wall that she can checkout all the time.

The girls loved watching each other paint.  They were reaching for each other and you could tell that they were really interested in what the other was doing.  Of course they thought it would be funny to only have one of them smiling at the camera at a time, but what can you do.  ;)

Of course the added benefit of all this is that I get to be friends with another mom that gets it. She knows all the same ups and downs that come with raising and loving a child like Sophie. I have met a number of friends over the last few years by being Sophie's mom and I feel very blessed to have those people in my life.

The girls checked out what each other had painted and showed off their paintings.  It was a great sensory experience for Sophie, she always loves getting messy.  After a fun afternoon Sophie was worn out and we just chilled out at home tonight.

I think the girls were setting up another playdate here, or maybe just telling some good secrets.

Getting messy is fun!

Yesterday was the first day back to school for Lucas since Christmas so Sophie and I were flying solo.  My sister was able to come over with my neice Zoe for the morning so I figured I would set up some painting for the girls.  I let Zoe choose the craft we did by offering two choices and she chose tinfoil painting. 

This was a crafty/sensory idea I had been wanting to introduce to Sophie. Sophie loved the mirror aspect of the tinfoil, I don't know why I hadn't tried it before. It also made alot of noise at first when she touched it so it really worked many of her senses at once (in a gentle way).  Sophie immediately got her hands on the tinfoil and was checking out what it was on her tray by looking as well.  I taped the tinfoil to a cardboard piece for stability and then taped that to her tray.

Zoe worked very happily painting alongside Sophie, at one point we even got a broadway production called "I Love Red".  It was pretty darn cute, she loves to sing like an opera singer and can really belt out the tunes she makes up.

Sophie choosing her paint colours with alot of focus.

The girls had a great time painting and when they let us know they had had enough in their own way I set up a sensory bin for each of them.  I had a large jug of epsom salts that were being unused and I had seen some ideas of how to use them on Play at Home Mom, a blog I love. 

I got out some of Lucas' tiny dinosaurs and other animals and set them beside a bin of epsom salts for each girl. I showed Sophie the animals and put them in the salt and let her figure out what to do. Zoe started to bury hers right away. 

It didn't take long before Sophie had her fingers in the salt.

Zoe wanted to see Sophie's bin and decided to add a few of hers to it.

Zoe told me that it was snowing on the cheetah, which was a mommy cheetah that still had it's baby in it's tummy.  She played with this for a long time.  Sophie was enjoying her bin as well.  I had to help her get her whole arm up a few times but she enjoyed moving her own hands in the salt.

I noticed last night that Sophie may have trigger finger again, her baby finger will not straighten.  It happened a couple years ago as well so I will have to keep an eye on it.  It self resolved last time (which doesn't usually happen) so I am hopeful it will be a short lived problem this time around.  I think that this type of play is really great for helping Sophie keep her hands open which is a good thing.

We tried a few more different items in the salts, the cubes above have coloured see through tops, mirror tops, kaleidoscope tops etc.  Sophie liked checking them out, Zoe liked using them as scoops.  Then we lit up the salts and decided to add some rubber balls for our last bit of playtime.  It was a fun morning and both girls were ready for a rest.

The girls got salt everywhere and Sophie was covered in paint but that makes it that much more fun. Sophie and Zoe thought it was hilarious when I vacuumed Sophie as we got all the salt mess cleaned up. Who knows what we will do tomorrow.

Homebound - in a good way

After the Christmas rush it is always nice to have a bit of down time at home.  Usually we are buried under a couple feet of snow by now, but this week it only stayed for a short time and now most of it has melted. That green lawn was not a welcome sight for Lucas, he was loving playing in the snow. He was actually volunteering to take the dog with me each night for his walk, Lucas would get all his gear on and would bounce through the walk like a rabbit. Diving here, rolling down that snowbank, he had never ending energy and it was so much fun for him.

Lucas was able to have some playdates at our house this week, which was nice for me because Jason has been away at a conference for the last 6 days, so Lucas having someone to play with gave me a few hours with Sophie each day.   We had an afternoon of fort building and Lucas made a stuffed animal fort with one of his buddies, we watched some movies and some football games.  It was more a do what you can to get through to bedtime than a planned activity schedule.

Sophie has been doing really well and she has been enjoying doing all sorts of stuff. She made some homemade playdough with our friend Ann, Sophie made a mess and she loved every second of it. Sensory play is definitely one of Sophie's favourite activities and this was great fun. Cherry koolaid made it smell delicious (it is actually edible playdough) and it is soooooo much fun to get your hands in to mix it all up. This project embodies active learning, it is so important to me that Sophie gets to participate on her terms during play.

We were able to spend some time with her cousin this week and they had a blast as well.  Zoe is Sophie's shadow.  She loves being with her and she loves helping her when she thinks she needs it.  Zoe is almost 4 and she is starting to understand a little bit more that Sophie is different, but to her it just means the opportunity to be a better cousin.  I love that.

Lucas was back to school today and he was excited.  He wanted to leave 20 minutes earlier than we usually do and I didn't have to get on him to get ready.  On one hand I was sad that our vacation was over (well, it was over last week when I was at work a few of the days, but even still) and on the other hand I was happy that he was enjoying the thought of seeing his friends.

Playing his new Wii game - this was olympic synchronized swimming, I was laughing so hard watching him do this game I was nearly crying.

Tonight Lucas was pretty hyper but also tired from his day at school and he and Sophie were both excited to see daddy home.  Sophie is passed out but Lucas is fighting sleep.  It's so hard to get back on that school time clock, hopefully in a couple of days it will be easier.

Hello new year!

2011 was a pretty great year, Sophie has become a bit more medically stable as far as her seizures and illnesses and Lucas has been doing well too.  We have so much to look forward to for 2012, Sophie is going to be starting school in September, she is getting a new wheelchair and hopefully her first low tech communication system is on the horizon.  Lucas is healthy and loving school and is geared up for soccer and football in the spring/summer.

The last week between Christmas and New Years Eve has been a whirlwind of activity. We have done more visiting with friends and family in the last week then we normally do in a year. But it is good, that is what the holidays are for and we have soaked it up and we have been thankful that Sophie has been healthy. She has had one seizure but we were able to manage it at home and she was happy the next day.

The snowless Christmas is not our norm, but we loved it for all our highway travels and it is easier getting Sophie in and out of the house without the piles of snow we had last year. I have to admit that I missed having a white Christmas though, it just doesn't seem quite the same, not as cozy somehow, but we made up for it by snuggling in our fleece jammies and having warm apple cider and cookies.

As per tradition Jason read The Night Before Christmas to Lucas and Sophie while we were at his mom's house before the kids got too tired and then we were off to see Santa and all the cousins at Jason's dad's house. All the kids are getting so big and they have alot of fun together. 

Sophie was completely enamoured with Santa this year and she lit up like little miss sunshine every time you mentioned his name. 

This photo cracks me up, we couldn't get a great photo of Sophie looking ahead so we told them to do a silly photo and Sophie was all over that, as were her cousins lol.  We didn't leave for our hour + long drive home until 11pm but Lucas and Sophie both passed out in their carseats within about a block of leaving.  They were exhausted.

Christmas morning was the usual blur of excitedness with alot of tiredness stirred in. Lucas was dying to open his presents and waited patiently until Sophie was awake.  I thought we was going to dive in head first under the tree, but to my surprise he chose one present for himself and then a handful of presents for Sophie and he helped her open them all while explaining to her what each one was.  Be still my heart.

Later in the day we headed out to spend Christmas with my family.  We had a fantastic turkey dinner with all the trimmings and a traditional British trifle as always.  The kids were all worn out by bedtime and crashed into their beds worn out from a busy day.

Over the last few days we have visited some more and entertained here at our house, Lucas and Sophie have been having fun discovering all their new toys.  Me, I am exhausted.  But it was a fun way to get tired out and I will gladly do it again next year.

Sophie is loving her new gigantic slinky and Lucas has been having a ball practicing his magician skills on all of us.  He is really good at it and has given quite a few shows to whomever happens to be visiting.  The newness of it all is so refreshing and gets you motivated to try new things and think ahead.