Starchild and the Little Mermaid

Lucas decided over a month ago that he wanted to be a member of the band Kiss for Halloween.  He started trying to recruit band mates and luckily one of his good friends decided it would be fun if the two of them dressed up as Kiss.

Lucas rocked it.

We worked really hard at piecing together his costume over the last week and I think it came out pretty great.

Sophie was a little bit harder, until I came across this Little Mermaid Ariel costume and I realized it was perfect.  She is like a mermaid, doesn't walk so well on land but is right at home in the water, just like my girl :)

Sophie was a trooper and tried to keep the wig on for photos, she even survived through having lipstick put on.  I think she looked adorable.

We had an awesome night trick or treating with two of Lucas' friends and came home tired with a huge haul of candy.

Happy Halloween!!

A visit to Sesame Street

A couple days ago Sophie and I had a fun morning watching the Sesame Street Live show that was visiting town.  We have gone to two Wiggles concerts together but they aren't on tour here this year so we decided to try out Sesame Street instead.

Our tickets came with a photo-op with two of the characters, Rosita and Grover.  They were super fun and very cute, Sophie had no idea what was going on!! :)  She was a bit shell shocked taking it all in.

Sophie doesn't watch Sesame Street too often other than on you tube, but she does love Elmo, she has a tickle me Elmo doll and has always gravitated towards his character.  He is bright and smiley and has a fun voice, what's not to like?!  I think she caught on pretty quickly that it was Elmo on stage but even if she didn't it was a great show with alot of music and singing.

A flash back to the 70's when I watched Sesame St.  I won this  album at school when I was in elementary school, I bet it is still in my parent's living room with all the other albums!

We had seats in the front row again and it really helps Sophie focus on the show because there are no little kids or other distractions in front of her.  Her cortical vision impairment (CVI) makes it difficult for her to focus in certain situations or with too much sensory stimulation but she didn't seem to shut down.  I really hope she enjoyed the show, she seemed to be enthralled!

Sophie was talking to Jenny here, the girl who is in the show but not in a costume.  Sophie really liked her singing and was "singing" back I think :)

It was a really great show and just right for Sophie, lots of singing, action and colourful costumes (all the reasons she loves the Wiggles too!).   Four of the characters came to Sophie during the show to say hello and shake her hand so that was really fun!  I am really glad we took a chance and saw the show.

On to the next adventure.

Getting ready for Halloween

Halloween is just a week away so we have been getting ready over the last few days.  We got all of the outside Halloween decorations up on the weekend, it was the perfect day to do it.
Lucas was having a friend over later that morning and I suggested we all decorate the front.  Lucas said ever so seriously "Mom! Don't embarass me."  Yes, at age 8 I am an embarrasment to him, it had to happen sooner or later.  So I asked anyway ;) when his friend came over.  He gave a very enthusiastic yes and since Lucas dodged that bullet of embarrasment we headed outside with our pile of scariness.  Sophie had a ball laughing at me being precariously perched on the ladder.  Sorry, no pics :P

Yesterday Sophie and I decided to play dress-up princess style, not something we had ever really done before so I figured it was time.  Sophie had her glow wand and we had on our shiny necklaces and she wore her crown.

Sophie had the best time trying to get my necklace.  The shiny beads really attract her attention and she can get a good grip on them.  The wand is fun too, it cycles through many colours and the fibre optic strands are fun to touch.

Last night we decided to do some fall and Halloween crafts.

We cut some pumpkin felt pieces for the feltboards, lots more pieces to add!   Sophie loves feeling the felt pieces.

My neice Zoe loved adding the glitter glue and glo fabric paint...

Then on to stamping and leaf paintings...

We painted the face of the leaves to make homemade stamps and pressed them down on the paper.  Then they added other stamps or whatever they wanted.  Zoe and Sophie loved the free-for-all version.

Next project is to complete Lucas' costume and to figure out what Sophie is going to be for Halloween!

Making waves

Sophie has been doing well since her big, long seizure at the end of September.  She has only had two more seizures in the last three weeks which is fantastic. 

I signed up Sophie for the Making Waves program here in the city and she has had two swim lessons now.  It is a swimming program for special needs children and we were lucky to get in this fall.  All the instructors are university students who volunteer their time and we pay via a donation to the program to help with costs.  I am very proud that the university I work for donates the pool for this amazing program.  It is a win-win, the kids get fun time in the pool and the students get experience for their program of study.

Sophie was very curious at our first visit, she is used to the pool at the Y so this was all new to her.  She was checking everything out at our first visit.  She had one volunteer the first week and a new one the second week, both young women were lovely and so great with Sophie in the water.  They worked so hard to keep her mouth out of the water and to keep splashes off her face (which Sophie hates).  They sang songs to her and talked to her the whole time to keep her comfortable with them.  So awesome!

Of course the new facility did have some annoying drawbacks. The handicap accessible/family changeroom did not have automatic door opener buttons and their were no change tables in that changeroom either (unless you have an infant) so it is not really handicap accessible for changing at all. So annoying in a brand new facility.  So I dangerously changed her on a shower seat the first week.  The second week I went to the women's changeroom instead and changed her on the counter with the sinks where there was more space to lay her down, not exactly ideal.  I will be talking with the manager of this brand new facility soon. Ugh.
 
We have had issues identical to this at the brand new million dollar outdoor public pool in our city as well, our ward councillor and head of recreation and pools in our city know us by name now. We will keep fighting for our girls right to use publicly funded places until polititicians and administrators start to listen.  One day, something that is called "accessible" actually will be.  Sophie is the most physically involved child in the program but there were other children in wheelchairs there that I know could have benefitted from some basic accessible changing equipment like a simple table or a lift like the Y has.

With all that said, I did make due so that Sophie could enjoy her lessons and despite the cold water (SO glad the moms don't have to go in lol!!) she had fun and that is all that matters.  Sophie showed off her swimming skills and I was very proud of her hard work.

Being Thankful

This Thanksgiving weekend has gone by in a blur like all long weekends do.
We have visited our families near and far, talked lots, told stories and ate too much great holiday food.  Of course we drove the long drive home only to realize that we forgot to change the half asleep kids into their pj's at the beginning of the journey, but that is all part of the fun.

We are so thankful for our friends and family, not only on Thanksgiving, but every day.  We try not to take for granted what we have, knowing that things can change in the blink of an eye.  Knowing that, because it has happened.

Lucas is becoming such a big boy, even though he was tired today from our long drives yesterday, he took extra photos for me until Sophie was paying attention to the camera (not always an easy feat).  He wanted to go back to his football catches but he smiled.  I was very lucky to get some really great photos today.

 You got that right, Sophie :)

Having a child with severe disabilities like Sophie has makes it a bit of a challenge when heading out to houses that aren't our own.  She is getting big and spends more time in her wheelchair than I would like, but we do our best for her and she doesn't complain, she is such a trooper.  I know that as she gets bigger it will be more difficult, but we will cross that bridge when we come to it.  For now, we are thankful that she is happy to travel and loves visiting with everyone.

Happy Thanksgiving!  I hope your holiday was filled with love and sunshine.

Up close

It was a beautiful day yesterday so I thought I would try to get a few shots of the fall flowers in our yard.  I would like to improve my macro photos so this was some good old trial and error. I don't tend to ever edit my photos so what you see is what you get.

Weekend is almost here :)

Ups and downs

This post is going to have no main theme to it, it is going to be a hodge podge of what has been going on for the last week at our house.  It starts out a bit bumpy, but now we are cruising and it feels good.

Sophie has pneumonia.  We discovered she has pneumonia because she had an hour long seizure last Tuesday, Sophie hasn't had a status seizure even close to that amount of time for over a year.  I did not expect to be riding in an ambulance at 2am that night but her nurse and I couldn't get her seizure stopped at home so off we went.  Sophie is such a strong girl and within a few days she seemed to be feeling better with only a cough and some tiredness to remind us that she is still sick.

We were unsure at first but decided to head to the cottage as planned this past weekend to go to Pumpkinfest.  Lucas had been once when he was little and we figured we would give it another go as a family of four.  It was very cold up north but we survived :)

Sophie was feeling pretty good so when we happened upon some pony rides at Pumpkinfest we thought we would try it out with her. 

Beauty, Sophie and daddy.....

Nothing phases this girl.  She was very interested in the ponies and she smiled lots.  It wasn't exactly easy for her daddy to keep her on the pony as it went on for a long time but it was definitely a successful attempt at something very new and different for her!

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Lucas has had another pre-season cross country meet since my last post about it and he came in 11th!  He was happy with that attempt and was pumped for the Regional meet today.  This was the big meet that you have to do well at to qualify for the finals.

He came in 5th!!!!!!!!!!!

This was a big meet and we are so proud of his accomplishment!  Now he is on to the finals in a couple of weeks.  He was so excited tonight he didn't want to go to sleep.  Who can blame him!