Party time :)

Sophie has held her own and has not had another seizure this week, so we were very happy to go to my neice's 3rd birthday party yesterday!

Zoe was very excited for her party and was all ready to greet us at the door in her Tinkerbell outfit for her Tinkerbell party.  :)

One of the drawbacks of Sophie's special needs is that I don't get to dress her up as much as I would like to.  I go for comfort for her as the main priority.  If I can keep her comfy in cute clothes then great, but I don't put her in jeans because they are tight and I don't put her in dresses because it is really difficult to feed her with her tube feedings and to keep the dress on properly while she is in her wheelchair.  I decided to go all out for Zoe's party and got Lucas and Sophie dressed up.  Sophie didn't have any tights that went with the dress so we just used some white socks.  She was cold anyway so we wrapped her up in a nice fuzzy blanket once we took some pictures.

Everyone had on their best cheesy smiles and then we were good to go.  I had barely taken the picture when Lucas ran one way and Zoe ran the other!  Luckily Sophie was happy to pose!

This was what Lucas was willing to give me for a photo later that afternoon...

Lucas was in charge of spraying the silly string.  He had it aimed the wrong way the first shot and managed to get most of the adults on the one side of the room.  It was pretty funny because no one expected it.  He got Zoe the second try though, he made sure of it.  She thought it was pretty fun.

Sophie gave Zoe's new Tinkerbell sunglasses a try, she thought she was pretty cool.

It was a fun afternoon and Zoe loved her special party.  Happy Birthday Zoe!!!

Today Sophie was a little groggy.  She had two pretty bad choking spells which were a bit unnerving but she seems fine tonight.  We played quite a bit while the boys were out at basketball and she was doing some really nice reaching with her hands.  She has always liked the shiny pompoms and she was happy to see them tonight.  We have also been looking at photos of our family I printed out today, she loved them, Sophie really loves looking at photos of familiar faces.

Don't mind her pj's, like I said we go for comfort ;)

Happy Monday!

Another holiday, another seizure

What is it with my girl and holidays.  It is rare for my Miss Sophie to let a holiday go by without a seizure.  She must have a calendar hidden under her bed or something and she knew it was Family Day today.

This morning Sophie was sleeping in a bit late, but she had been up late so I wasn't too surprised.  When she woke she started having a seizure.  It wasn't any kind of seizure that I have seen her have before though, this one was quite different.  I think it started as a simple partial and morphed into a tonic-clonic.  I thought it stopped after about six minutes, so we put the rescue meds away that we had drawn up and I picked her up out of bed to give her some cuddles.  She had been awake and aware through the whole seizure so I knew she might be a little scared.  We cuddled for about fifteen minutes and I took her back to her room to change her.  When I laid her down it looked like she was seizing again, so I watched her for a while and it became obvious she was, we got the meds out again and gave them to her.  The seizure stopped by the time I had given her all the med and she was pretty dopey.  She fell asleep a short time after for almost an hour and a half.

She was not herself for the rest of the day, she was pale and clingy and had almost blue lips for a while.  I was afraid that we were going to have to take her to the ER to get her O2 sats checked, I just hope she didn't aspirate.  But she did perk up by the late afternoon when my sister came for a visit with my niece.

So we didn't really do much of anything for family day but with all the snow we got last night I didn't really mind not having to drive around and be out in the cold.

Sophie's room...

This weekend I did have a chance to put up some decorations in Sophie's room.  I have had some wall decals for a couple years that a relative gave her for Christmas, so I thought it was about time I put them up.  Sophie loves them, she has been looking at them each time she is in her bed.  She even seems to be looking at the bee when prompted!

Sophie's room has really come together, it is looking more and more like I envisioned it could when we turned her room into a bedroom during the renovation.  Some items from her old room are here and there are some new things too.

My sister made this cute plaque for Sophie when she was born.

This was my dad's when he was a little boy, we reframed it for Sophie's room.  I think it was made by Sophie's great-great grandmother, but don't quote me on that lol.

One of my favourite things in the house is Sophie's chandelier.  It makes the best shadows on her walls and ceiling and it is just perfect.  She loves it when I spin it slowly and it sparkles around her room.

I have a large butterfly mirror to hang in her room and then it will be complete.  A pretty room for a pretty girl :)

Looking forward

Sophie has a friend at her playgroup that happens to have an Ipad,  Kingsley was very kind and brought it for her to try out.  We have never seen one in person so I was so excited when Kingsley's mom offered to bring it so Sophie could have a go. 

Unfortunately Sophie continues to be a people person and was only interested in seeing everyone's reflection in the Ipad or watching them watch her lol.  But I did get to have a chance to hold it up to her and get her hand to touch the screen.  It is so sensitive to touch that I believe it will work awesome for Sophie for play and for communication.  We will have to get some sort of stand for it so that she can see it properly but that will be the only barrier as far as I can tell!  I am convinced this will be a fantastic piece of technology for Sophie.

Thank you so much Jill and Kingsley for giving us the chance to use your Ipad, it was alot of fun!

We had our group meeting with Sophie's therapists and I think it went quite well.  Everyone was onboard with the direction I think we should be going and we brainstormed up so new ideas for Sophie to try. 

We are going to have another Recreational Therapy consult to find something new that Sophie can swim independantly with, she has grown out of her old adapted lifejacket.  We are most likely also going to start swim therapy, yay!  Sophie loves to swim so much and we are going to continue to take her for fun swims, but we are also going to start having therapy in the pool with her therapy assistant.  In addition I have recently signed her up for the Making Waves program which I hope will be a hit.  It is one-on-one swim lessons at the university for children with disabilities and I am hoping that she will get into the fall program.

We are also going to prepare for another consult with Augmentative Communication.  We did this almost 2 years ago and were pretty devastated when they would not even refer her to the program after the consult.  They felt she couldn't do what was needed to use any type of AC.  So we are going to go for it again.  I really feel that just because she can't use her hands doesn't mean she doesn't want to communicate and wouldn't be able to if given the right equipment.  We will see how it goes, wish me luck lol.

We are going to try to find another sitter for Sophie as well, she only has her wheelchair to sit in and nothing else.  Her tumbleform is too small and never had the right straps.  We need to find something else so they are going to look into it for us.

Another appointment at the Special Needs Vision Clinic is also in the works.  It has been about 2 years since we were there last and that was pre-seizures.  So we have alot to talk about and find out if her vision has been affected, we know her eye movements have changed so it will be interesting to see what the Dr. has to say.

We got a nice piece of mail yesterday, Sophie was approved by Easter Seals for funding for her car seat and for half of the bath chair.  Yay!  Easter Seals is a wonderful charity for children with physical disabilities and if you are looking for somewhere to donate I can personally say that they make a huge difference in the lives of the kids they help.

Valentine's Day

Lucas and Sophie both had fun preparing their valentine's for school. 

Sophie had the most fun helping me rip the valentine's apart.  She LOVES the sound of paper ripping, it is very funny to see, she bursts out laughing.

Sophie did  very well and held a crayon for a second or two each time I put it in her hand.  I helped her colour a little on each valentine by holding the crayon hand over hand.  She thought it was great!

I had fun making their valentine presents, I tried to make it a special thing this year.  I made a candy shish-kabob for the first time and Lucas loved it.  He also got a valentine cracker,  I had never seen them before but Lucas loves Christmas crackers so I figured how could I go wrong (a dollar store find)!  It had a valentine inside which was for a trip to the ice cream store.  It also said Have Fun! at the bottom and he interpreted that as another valentine present and he said he chose clothes shopping at the mall. Yup, that's my boy lol.

Sophie got some textured stickers, a glow butterfly wand and a valentine cracker.  It was all a hit!

And this is added to my list of all time fave photos of my two together...

The world of Apps.

Spring - are you there?  I need you.

I really don't like mid-February.  I am so done with winter and I can just feel it in my body that I need spring to be here.  I am tired of not being able to take Sophie out in the neighbourhood.  It is so frustrating that she can't be out and about because she is in a wheelchair.  She is too big for the sled I used to pull her up and down the street in when we lived in our old house, so we go from house to car and car to house and that is it.  She doesn't do very well with the cold to begin with, so this extra cold stretch we have been having has been difficult for her. 

I can see the icicles melting and the sun is just a little brighter and closer, warm weather has to be on its way.

So in the meantime I have been focusing on inside stuff.

We have been trying to get started on some new ideas for her development.   I have set up a big meeting for tomorrow with her physiotherapist, occupational therapist, her early intervention specialist from CNIB and her therapy assistant as well.  I want to start on some communication ideas for her so that she can let us know what is going on in that mind of hers.  She has been making lots of noises and I know that she knows what she is trying to tell us.  Something exciting that I am going to propose is to get her an IPad for her birthday.  Many special needs kids that are severely physically and developmentally disabled, like Sophie, have had their worlds rocked by the IPad and all it's apps.  It uses a touch screen so she just needs to tap it to get it to work depending on what we have uploaded onto it.  Sophie loves watching us use the laptop and often reaches for the keyboard. 

I have been spending alot of my time looking for apps that would work for Sophie and I have found many.
These are a few I found that seem like they would have great ideas for apps for kids like Sophie, and each web page inadvertently leads you to new blogs and apps and on and on!!

http://babieswithipads.blogspot.com/
http://blog.easystand.com/2010/05/ipad-apps-for-kids-with-special-needs/
http://mobilelearning4specialneeds.wikispaces.com/Apps
http://slpsharing.com/app-resources/
http://www.tuaw.com/tag/assistivetechnology/

Now of course this is all in theory that it will work for my girlie because we have never actually seen one in person lol.

We have been doing lots of playing in her pony walker so that she can choose what she wants to go to and play with.  And it forces her to keep her head up a bit and encourages her to use her arms.

She works so hard!

Sophie has just gotten over a very bad stoma infection so I am really hoping that we can move on and get back outside with warm weather and leave another winter behind us.  It can't come too soon.