Oh My!

Work, organizing and Christmas decorations!
Gifts, Christmas cards and hanging lights!
Christmas specials, bathing Sarah and candy canes!
The Christmas tree, work and feeding Sarah!
Red bows, Christmas cookies and laundry!
Work, teaching Sarah and food shopping!
John's birthday, Christmas pajamas and wrapping!
Meeting trains and planes, sitters for Sarah, and work!

Oh My!

:)

Sunday Sarah

Happy Thanksgiving!

A great day was had by all :) There was a marathon monopoly game, a 'beautiful apron', lots of wonderful food and delicious desserts, and lots of laughs. Oh and let's not forget the obligatory football games. Everyone picked their 'secret santa' for Christmas which is always fun and interesting. Sarah has one too but I won't divulge which lucky person she is surprising with a special gift this year!


These previous two pictures are funny because Sarah would not stop looking at Jimmy, no matter how hard we tried to get her attention. Very cute. She just loves her brothers! I took these the day before Thanksgiving because I knew the day itself would be too chaotic for her.
The following pictures were taken at my sister's today, she outdid herself with the meal! I picked up an apron for her over the summer for Thanksgiving. Isn't it lovely??? I think so! Ha!



Jimmy

Sister Ali

Cousin Brian and John




John

Jimmy

They have landed!

This is what I see this morning as I putter around and pick up the house... various shoes by the door,



'jimmy stuff',




two laptops,




and john on the couch :)

We're Ready!

I'm off to work and then tomorrow afternoon it's 'pick-up day' for John! Woo-hoo. I hear it is going to pour rain, but who cares? I don't mind driving 90 minutes to grab my second born, no matter what the weather. I probably won't even notice it :) I can't wait to have him home tomorrow night. Then it will be 2 down and one child to go. And when will my oldest arrive? Jimmy flies on his own busy time and will appear sometime before the big meal-lol. Or maybe during the big meal!! I'll take it any way he chooses.

A room for Sarah

So, as the busy week nears, I have felt the pressure to get my little green room ready for Sarah to spend time in during the chaos of having my two lively young men bounding about the house in a few days. Sarah needs quiet. I wanted a separate room to put her in that was not her bedroom. So the green room is the perfect spot. I set up a DVD player/TV, brought in some books, a pretty rug, dolls, animals(stuffed!), twinkling lights and put a soft chair in there for us to sit with her and feed her, read to her or just hang with her. That way, she is removed from the activity but not in bed:)
So, it's real cute and cozy. I gave her a dry run tonight after her bath and she loved it. She kept looking at all the lights and singing to her music video. In this room she sits in her large, comfortable, soft wheelchair that tilts back if she needs it. She is rarely in her wheelchair in the house, so I will use it in here. It has nice side support so she can't lean to the right like she likes to do, which is a good thing.
I am optimistic that this room will help her over the holidays, they are always so hard for her. Much too much commotion.

Riding, getting ready and the Wizard of OZ

Today was a mish-mash of stuff. Somehow I crammed it all in and Sarah still remained under the impression that she had a 'great day'. It started with an early riding lesson (12 noon is early for us!) The day was beautiful with no wind so she rode outside rather than the indoor ring. She did well with only a little protest at the beginning as we stretched her legs wide over the saddle. It's the best physical therapy ever, this riding gig!
Anyway, we were home by mid afternoon, at which point she had a huge meal and a nice nap. This gave me a chance to get organized for the boys' homecoming next week. Woohoo! There were food lists to be made out, bed sheets and towels to wash and fluff, a call needed to be made to put John back on my car insurance, lights had to be put on our 'christmas tree'(see previous post), fresh batteries for the camera and flip video..... Very busy but very exciting.
John is due in by Amtrak on Tuesday and Jimmy is driving up the east coast with an ETA of Wednesday. My brother will arrive Thursday morning.
So back to Sarah...once she woke from her nap, she had a bath, hairwash and blow-dry, then creamed, powdered and snuggled into pjs. I plopped her in front of a warm fire and she delighted in english muffins and butter. Then it was time to watch Barbie and then part of the Wizard of OZ before an early bedtime.
What can I say about this movie for Sarah? I started putting it on for her a couple of years ago. At first, she watched it for the songs. Dorothy and the Munchkins. Then in the last 6 months or so I noticed her studying the Wicked Witch. She would lean in and look at that awful green face...not afraid but fascinated...and listen intently to her voice. So I started telling Sarah what the witch was talking about.
Now she is all about the ending. Or should I say she is all about the idea of 'home'. Do you have any idea how many times Dorothy says 'home'? I don't but I am sure Sarah does. She loves this scene where Dorothy is so happy to be 'home'. Where she is in her bed with her family around her. This is Sarah's idea of heaven. She loves to be going home, to be in her home, to be staying home and then, to also be in her own bed in addition to it all?--ahhh, what more could a girl want? According to Sarah and Dorothy, nothing.



There's no place like home.

Maybe I should get her some ruby slippers...just in case.

Can I just say...

How cute is this sad little Charlie Brown Christmas Tree?



I just had to have it.

I think it just MAY be our official tree this year!!

That, at least, is what I am going to tell the boys :)

It will NOT go over well ;)

Especially for John. He is all about the christmas tree, every year.

Hee hee.

Moving along!

So the time has come to move Sarah into the electronic age for communication. For the last 10 years, Sarah has depended on me to bring her choices in the form of flashcards with written words on them. For example: Sarah, Do you want BED or MUSIC? or Sarah, Do you want DRINK or SANDWICH? And she would show me her choice by grabbing the card she wanted. I also used YES or NO in a similar fashion: Sarah, Do you want to go out in the car? Sarah, are you tired? hungry? mad? Sarah, Is this the color blue? the letter G? .....And she would grab YES or NO.
This all was fine but she totally depended on me to bring over the cards. THAT is about to change! Yes, siree! We are moving ahead.

Where she is headed is to a computer that can be acessed by her touching the screen or using eye gaze. That's right folks! She will be able to just look at a choice and the computer will choose it and say it out loud to her. I will start her with 4 choices(words) on the screen and she will be taught 'eye gaze'. She will learn that by focusing on something for a few seconds, the computer will activate, light up her choice and speak it to her. Isn't that cool?
What's even cooler is this: Let's say she is hungry and wants a banana. She can look at the 4 choices on the screen and see, say, EAT,CAR, TIRED, MUSIC. She can look at EAT. The computer will register this, say outloud, "I am hungry" and then the computer will change the screen to show four food choices and then she can find 'BANANA'. So it will have levels that she can move through to get at what she wants, all by herself, with no help from mom!
These computers also have digital cameras built in so I can make her books with pictures, she can hit the screen and 'turn the page', also I can import all her favorite music from my computer, she will be able to choose which songs to listen to, it will be internet accessible which is great as she has some children's sites that she likes and it will also have academics. Yes, she can improve her reading skills and hopefully start spelling.

I am meeting with representatives from a couple of companies that make these devices this month and hopefully will trial them with her in the new year to see how she does and which one is the best fit for her. Then, of course, there is the arduous process of insurance submission and approval, but I am excited for her!

Five years ago, this technology was not available, but it is now!!! Woohoo. Here are pictures of the two I am considering for her and will trial in the coming months.
All this with eye gaze and direct touch to the screen.



Above is the Tobii CEye




And this one is the Eyemax, by Dynavox.
Both screens are about the size of a typical laptop.
Cool, huh? They are shown here on stands, but you don't have to use those or you can get a rolling stand that moves easily about the house. That actually would be perfect for Sarah as she is always sitting or standing in differnt places. She rarely sits in a wheelchair unless we are out of the house. They are definately portable enough for when we are on the go.

Yay!

The magic bear

So this is what I saw when I came back in the living room after making dinner. You may be wondering... Why, is this at all interesting? Actually, when I saw this scene I burst out laughing.
Sarah likes to hold her pink bear down in her lap with both hands. She moves bear from hand to hand while she watches TV, always down in her lap. When she is done with him, she drops him and he lands on the rug.
I do not know what went on while I was in the kitchen, but bear magically was placed precisely on the handle of the rocking chair. And let me just say, he was very precariously, perfectly, perched on the tip. How did he get UP there? Sarah doesn't do UP! And she doesn't place anything anywhere either.

Anyway, it made me laugh. Poor bear. Sarah cracks me up. You never know with her :)

John!

I see him! Do you? That's all I've seen of him in 2 1/2 months. He'll be home soon, but not soon enough for me!!

Sarah and John, 10 years ago

I came across this series of photos I took of the two of them on a warm, July evening. I think they say so much. They were the best of buddies. She really misses him while he is away at college. So do I.