Scrappin' Day

This weekend I was able to have a fun day with my mom and sister.  We went to a scrapbook crop and I had fun working on a Christmas album.  I have made a few Christmas albums in the past but I have fallen a bit behind.  I am working on Christmas 2008 this year :)

I was pretty pleased with what I got done, I started about 15 pages, and I finished (more or less) about 6 of them.

I still need to add some more embellishments to many of them, as well as the journaling, but I was pretty pleased with what I accomplished on my day out!

I have the scrappin' bug again so I hope I don't leave the rest of the pages undone for months to come.
Anyone up for a scrap night?  :)

Friendship in a Box

Lucas has been going to sibling workshops for a little while now.  They are fun days for children who are siblings of a child with special needs.  They get to have pop and pizza and play games and do crafts or whatever they want. 

The leaders also do a little subtle talking with the kids about life as they know it.  All the kids, more or less, get what the other kids go through.  Dealing with having their parents and siblings at the hospital, appointments and time spent with their siblings that they might want to have spent on them instead.

When he returned home from the last workshop Lucas was very proud to show us a paper box that he made.  It is a friendship box.  He announced that he could have made it for anyone but he was going to give his to Sophie.  :)

Lucas has a hard time interacting with Sophie because he just doesn't know what to do with her.  It has been difficult for me to see him play with my niece because it shows me the way he would interact with Sophie if she were typical.  As Lucas is getting older he involves her more but it takes alot of encouragement.  I know that he loves her very much, but she is a little bit boring to him. 

Life isn't easy with a sister like Sophie.  However, since he was about four years old he has been explaining to any friends that ask questions that she has CP and doesn't talk or walk, that she eats through a feeding tube and has seizures.  He knows the whole deal and is very proud to tell her story.

Sophie's world revolves around the God of Lucas.  Her biggest smiles are reserved for him and it is true love for her big brother.  So when Lucas brought this little box of friendship for her it was a proud mommy moment and a reminder once again of what a thoughtful, loving brother my Lucas is.

Shoppin' Day - Sophie Style

Sophie and I had an appointment at a company that sells special needs adaptive equipment.  Today we tried out a few items and we were pretty successful.

Sophie is getting big.  She is long and she now weighs over 40lbs.  We have tried many, many car seats at regular retail stores but all the boosters that are out there are not supportive enough for my floppy girl.  Sophie has very little trunk and neck control when in the upright position so she needs alot of support.  I would love to get her one of the trendy pink car seat boosters but they just don't work for her, even with the five point harness.  She falls to one side because there is not enough head support.  She gets her legs and arms caught on the arm rests, not to mention her feeding tube getting all tangled in them as she moves around.  The seat depth isn't enough for her long legs, most kids just dangle or put their feet up on the cars' seat, but when Sophie dangles she arches or she rolls her pelvis forward.  Not comfy.

 

So we went and trialled a Britax Snugseat Traveller Plus.  Sophie won't need the pummel because she doesn't scissor her legs, and this one is totally not adjusted for her, but you get the idea lol.  It has two tilt positions which is excellent.  She can be in this 5 point harness until she is 105lbs!  I would like to see me getting her in the carseat when she is 105lbs lol!

This is one of the very few special needs car seats in Canada (we have found one other).  Of course, as soon as you call something "special needs" the price multiplies by 10.  This car seat is $1000.  There isn't that much more to it than any other booster, a bit more fabric and a bit more plastic.  Certainly not $700-800 more.  It is a rip-off and it is so infuriating.  But she needs to be safe and nothing else will work until she is in a wheelchair in the car.

Then we had a look at some bath chairs and shower chairs.  A little more fun to look at and I could think of a whole bunch of ways we could use these.  Like taking them to the beach for example.  We are going to order a regular bath chair with a shower base that is on wheels.  We will revisit the shower chairs when she is older, they are a hard plastic with foam and a commode and they just don't seem all that comfy, or necessary yet.

Sophie definitely had a preference for this Manatee bath chair so that is the one that we are going to apply for.  She will get one that is a size smaller.  The chair and shower base with wheels is $1500 - yep, another big pricetag, but not quite as outrageous for what you are getting. 

Insurance and ADP (Assistive Devices Program) both don't feel that car seats (for children that are required to have one by law) or bathing are actually necessary for children with severe disabilities.  Just like ADP doesn't feel that hospital beds are ever warranted for any person in Ontario.  Don't get me started. 
But this is where awesome charities like Easter Seals and The Ontario Federation for Cerebral Palsy jump into action and let families spend their money on enjoyable, typical things for their children instead of medical equipment.  These are a couple wonderful charities that help alot of severely disabled children and their families.

My mom and sister just recently went on a trip to Ikea and they brought back a sheepskin for Sophie.  Sophie is having issues on the back of her head because she is always resting it on either the bed or her wheelchair headrest.  So one of her Dr's suggested a sheepskin to help prevent any sores or hair loss.  She already has a small bald spot from when she was a newborn and in the incubator for so long and developed a sore.

I think it will be a definite improvement.  Doesn't it look comfy?!

She was pretty worn out after our two hour shopping spree and she slept for 2 1/2 hours when we got home.  We'll see when she falls asleep tonight.  Could be an all night dance party at our house lol.

All about the Chiclets

This has been a busy week of nothing.  You know those days where you feel you don't have enough time to do everything that has to be done, and the week buzzes by.  But by Friday you feel like you got nothing accomplished and you have nothing to show for all the time that disappeared so quickly.  That was my week.

However it did seem to involve alot of teeth, or lack thereof.

Lucas lost his 2nd front top tooth this week.  I just missed being able to sing All I want for...   well, you know the rest.  Darn it, I really wanted to do that.  We even tried to pull out that little sucker on Christmas Eve, but it just wouldn't budge.  Oh well, such is life lol.  We have had fun telling him to say certain words that make him whistle or say things that make him talk with this hilarious little lisp.  I am so evil ;)

Then Sophie had her teeth cleaning at the dentist.  This was her second cleaning, she had the first in November.  We are going every six weeks for a little while to try and get the tartar under control.  Because Sophie has a severe oral aversion it is difficult to brush her teeth.  She flails around and purses her lips and whacks your hand out of the way with her arm.  It is pretty awesome because she gets you right where she wants, my nose usually, or my eye.  The precision is incredible for a girl that has no use of her hands or arms in general.  Interesting....!  Quite the diva.  And she doesn't eat orally so that helps in one way, but it also means that she doesn't flush her mouth with water, etc.  So we have been seeing the dental hygenist (who is awesome!) and Sophie has been doing well.  Her first visit we were able to get one tooth cleaned.  Well half of it.  Yup, one part of one tooth.  Then she was at her limit.  She started gagging and threw up.  So we said, o.k., all done.  We didn't want her to aspirate.

This is Sophie at her very first dentist appt.  All they did was count her teeth, she was a little shell-shocked.

 This week we got four teeth cleaned!!!  She was so good.  Well, I almost lost my hearing from her scream (God I feel sorry for any little kids that were in the waiting room about to come in.. yikes).  It was seriously an exorcist moment.  It wasn't a pain scream - I would have stopped the appt. right away, it was an all attitude scream, in the I DON'T LIKE THIS, STOP NOW!!! kind of way. So I started singing to her and she looked at me and she settled.  It distracted her enough that she forgot that she was mad and we made so much progress!  We are hoping that one more appt. will suffice and then we can just go every 6 months or so.

Skating. Take Two.

When Lucas was about 3 1/2 years old we signed him up for skating lessons.  Lucas has always been extremely athletic and very co-ordinated, even when he was really little.  He had done Little Gym and ballet and enjoyed most sports that we tried out at home.  So we figured skating was a good next step during the winter.

Wrong.

Can you say deer in the headlights?

Lucas was not a great skater.  He is a perfectionist and if Lucas can't do something fairly quickly he becomes frustrated with himself and is very hard on himself.  We stuck it out for all the lessons but he didn't progress a ton.  Jason and I were picking straws on who had to take him each week because it was an exercise in back-breaking for us.  We called Lucas spaghetti-man because he would just go limp on to the ice or in our arms because he couldn't figure out how to stay up and that was so upsetting to him.

This is where alot of his time was spent.  My poor little guy.

By the end of the lessons he was able to stand up and even skate for some distance.  But it was a realization for us that he was in fact still little and that we tried this venture a little too early for him.
But he was very proud of himself and he really had come very far.  We were proud too!

So flash forward four years.  Yes four.  He had not been on skates since.  We were kind of nervous to get him to try but his friends are skating now and there is lots of talk of hockey.  So we signed him up and he had his first lesson this weekend.  This time the parents are not on the ice.

He tried so hard, but it was like his first time on the ice because it had been so long.  He was spaghetti-man 20 minutes in and I could just feel his frustration.  He was having trouble standing and he didn't know how to stop once he got going.  I was a really bad mother and I was laughing quite hard watching all these poor kids falling over and over.  But man it was quite the comedy, it was like watching bowling pins going down.

But then he got it.  He is awesome and he persevered.

He was placed in a group of 3 kids at the 20 minute point and something just clicked with the new instructor and he was doing it.  He was able to stand up for much longer and he could get to the pylon they had to skate to pretty quick.  By the end she had him doing little turns.  I was so proud of him for sticking with it and I think that he will really catch on well over the next few weeks.

My superstar :)

Therapy but fun

It had been quite a while since Sophie and I had been to the snoezelen room so we headed there the other day.  If you are wondering what in the world snoezelen is, it is a sensory room for people with special needs that is meant to be soothing and stimulating by activating your different senses.  It has a whole assortment of items for sensory stimulation including music, swinging chairs, fans, differently textured balls and fabric, many kinds of lights and movement like the bubble tube.  Sophie has a severe vision impairment as well as multiple physical limitations and snoezelen is one more way that helps her interact with the world around her on her own terms.

You have to be very careful about over-stimulating your body and mind when using snoezelen.  On our first visit when Sophie was little, we turned on a bunch of things at once and it was too much.  She cried the whole time and I thought it was a bust from then on in.  When we did go back again we took it much slower and just turned on one item at a time and it worked much better for her.  I have learned what equipment she likes and dislikes and she will play the whole hour most of the time now.

These pictures show Sophie with some fibre optic lights.  It is amazing how she will open her fingers and touch the strings, she is usually fisted but she likes to touch these and pull on them.

This is one of Sophie's favourite things at Snoezelen, it is an infinity wall and she has always enjoyed it.  She is lying on a massage mat that vibrated and hummed.  She thought the sensation was pretty funny as my dad turned it on and off.

This picture shows the fibre optic lights as well as a light show that spins on the wall.  You can choose an assortment of pictures but she liked this liquid looking one.  She likes lying on the bearskin rug too.

This is a bubble tube, it changes colours and has fish and bubbles moving all around inside the tube.  There is a button controller that I try to get her interested in so that she will try to press the buttons for a cause and effect and she will sometimes use her feet to push the buttons.  But usually she just wants to look in the mirrors that are behind and beside us in this area.  Sophie LOVES mirrors. I don't know if she is looking at the tube or at us when we sit by it, but she becomes mesmerized.

In my committment to do more this year, I am hoping to get back into a regular schedule of visits to the snoezelen room with Sophie.  It is alot of effort but I think it is worth it.  I have tried to incorporate snoezelen-esque items into our play items at home and they are some of her favourite toys.  Of course you could spend thousands on the real deal like the one we visit, but we find alternative items that work just as well.  Sophie has a fibre optic toy, a glow bear, a mini bubble tube/lava lamp, a "fish aquarium" screen and many other toys that do the trick.

Dreaming of far off lands

It is snowing again here, all the melted snow is being replaced with big fluffly new flakes.  It is feeling like January should and I don't like it one bit.  I am wishing I was on my way to Hawai'i again, this time with the blink of an eye, not 20 hours of travel.

Can you feel the warmth?!  This was where we had dinner at our hotel each night.  Ahhhhh.

But we are here all snuggled up in our home, pulling out more fleece blankets and settling in for the long winter that is ahead of us.  Sophie has been having difficulty with the cold and she has been shivering alot, even inside where it is 22 degrees.

We just need a little of this...

And the rainforests in Hawai'i were, in one word, breathtaking.  They simply were the most amazing landscapes I have seen in a very long time.  I have traveled to many places and the rainforests here just spoke to you of ancient times.  You could feel their history, their ancestors, the mists were so mysterious and I have never seen so many rainbows in my life.

It was so very majestic and it just went on for as far as the eye could see.  The mountains are not green from moss, they are green because they are covered in trees.  It was hard to tell but they were huge trees that are unlike any we have here in Canada.

And then we came across the lava beaches.  They had these amazing green plants growing on the hardened lava.  We were told that lava carried good and bad spirits, but you never knew which piece held which so it was a bad idea to take any from the beach.  A ploy to keep the lava at the beach?  Probably, but I didn't really want to find out. 

The green and black against the blue sky and ocean was so beautiful.

No surfboards for us here at home, but Lucas has his snowboard all ready to go.  It will have to do :)

New Year Inspiration

January has come, once again, out of the blue.  Wasn't it September just a few weeks ago?  How does the time go so quickly?  Christmas holidays are over before they began! 

New years day is a day of recuperation for our family.  The dizzying speed of Chistmas all comes to a halt on new years day and we just cocoon for a couple of days before life starts up again.

We had a really nice new years eve party with a group of good friends this year and Lucas stayed up with his buddies until midnight (and beyond).  He was so exhausted today and yesterday, but I am hoping he will be caught up for school tomorrow without any major issues.

I have never really done new year's resolutions but my hope for this year is to do more.  Plain and simple, more of everything.  More play therapy and attempts at augmentative communication  for Sophie and  more scrapbooking, sewing, photography and creative thinking for me.  Lucas is an information sponge and I want to encourage that everyday.

I have felt like I have been in a bit of a rut, out of tiredness and laziness, for a while now.  I hope that this new year can get me going to start working on and finishing projects.

I finally hung pictures in our new house.  It is amazing how having a few pictures on the wall can make a house feel like a home.  I also put up new drapes in my bedroom, it felt so good to put the cardboard pieces that were my window coverings for the last 6 months to the curb.  I feel inspired to keep going and I am excited to find out where that inspiration takes me.

Happy New Year!