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.

A Day Trip

I hadn't been able to make it to Provincetown at all this past summer. I had much too much going on to get there. And even if I had been able to go, I wouldn't have enjoyed it as I was not relaxed enough.

Today was a gift. To me. It was a beautiful fall day and unseasonably warm and the colors were blazing. There was no wind. Yesterday, it had poured buckets which gave me the excuse to get everything done at home. So, today, Sarah and I were ready to hit the road with the camera. And there was no better place to go than Ptown. The throngs of tourists were gone, the ocean was still. The shops and restaurants were open and not crowded. And Grammy's old house had a fresh coat of white paint, which I hadn't seen in quite some time.
We ate lunch at one of my favorite places, The Lobster Pot, took scads of pictures and of course, purchased the all important 1/2 pound of chocolate fudge, which makes the drive home for us much more delightful!

Sleep, the lack of

This is the goal. Sleep for Sarah.

However, last night it was not going to happen. She was fed and bathed and into bed at a nice bedtime hour-7:30 pm. She had had a good day, all was well. And then. She decided this was a good night to stay up. I went in after one hour and saw this:



And so I settled her down and went back out to the living room to fold laundry. An hour later she was humming and giggling so I padded down the hallway to her room, opened her door and saw this:



All smiles for me, 'Hi mama!!!' she seemed to say. 'Whatcha doing?' "I'm having fun in here!'

So I gave her a glass of water, covered her back up with her blanket and headed out to watch Larry King. Another hour crawled along with the incessent giggling behind her door. Now I am on the computer, chatting. I pause my life and tiptoe down the hall to peek in and see what is going on in there. I see this:



Good lord.

So I give her a little lecture about how it is bedtime and she needs to go to sleep. She listens but doesn't care, promptly busting into another round of chuckles. Grrr. So I get stern and TELL her to go to sleep. Ha! Like THAT is going to work. So back down the hall I go, hoping she will see the light(dark).

Another hour later, there are still gymnastics going on in her room, but with slightly less enthusiasm, I poke my head in again during the 11 o'clock news and finally I see this:



Ahh, we are getting there.

I think she was asleep by midnight or 12:30. And did she sleep in this morning to catch up on those missed hours of beauty time? Nope! Up bright and early, ready to go. See?

So far, so good

No sign of any 'episodes'. It has been 11 days. This is good. Knock on wood. I took her to her pediatrician and he said to keep a watch on her and if she has more 'episodes' to call her neurologist for an EEG. So I wait. Fingers crossed :)

A reprieve

Tonight I took Sarah out for dinner. We rarely eat out as it is just too expensive these days. But, I figured we had earned it after the difficult past few days. We deserved a break. So, we went to our local little place in town. They happen to have really good clam chowder :) We went early, before the dinner crowd, before the rush. We sat in a booth in the bar area. I like the TVs, and she likes the ambiance.
As I sat there feeding Sarah her french fries, dipping them in ketchup and sipping on my coke, I started to unwind. I realized that I was perfectly content and happy at this moment and it made the stressors of the past week all worth it. All the long work hours and worries about Sarah's health. All silenced while we munched on grilled cheeses. No where to go, no where to be, just sitting. And eating. Sarah was very busy orchestrating what she would take a bite of next, happily smiling at some of the sounds in the restaurant, and wrinkling her nose at the carbonation in the coke.
When we were done, I was getting organized to leave and our waitress came over and handed me a giftcard to the restaurant. She said it was from one of their 'regular customers' who wanted to treat us to the next meal we had here. It was given anonymously. I didnt' know what to say except 'tell them thankyou for us'. I had no idea we were being watched :) And I didn't want to look around the room.

It was a sweet day.

Tough day

I knew today would be difficult for Sarah, but not the way it finally panned out. We had her biannual-orthopedic-surgeon-visit. I had expected there to be numerous xrays of her hips and spine, which is a horror no matter which way we look at it. But, joy of joy, no xrays this time. Oh, yay, I concluded. This will be an 'easy' visit. I was already imagining what my dinner would be at Au Bon Pain in the hospital lobby:)
Sarah was well, happy and waiting patiently for her visit. I took some pictures while we waited, which you see here. All was good.
The ortho came in and did his flexibility testing on Sarah's muscles, bending her every which way and that. It is painful for her due to her dystonia, but it takes only 5 minutes and she always does OK with it. Not this time. She turned a shade of white, whiter than white and lost some of her tone. She was in trouble. The doctor had left by now and I just laid her down and let her come around for about 15 minutes or so. I was concerned by this response, but her color returned and we went down to eat. She seemed OK. I knew she was hungry.
Halfway though the meal, she had, what appeared to be, a small seizure. She has never had one before, but this seemed to be one. Some vibrating of her trunk and fisted hands and lots of eye blinking. It lasted for about 2 minutes. And then she ate the rest of her dinner and has been fine ever since.
Me? I am not so fine. I am stressed and tearful, knowing how the seizure monster can rear its head and cause all sorts of havoc on a person's and their family's life. I thought we had dodged the 'seizure bullet' and I have always been so, so thankful for that! And now, it might be knocking on our door. I can't believe it. A nightmare for me. She has so much to struggle against and now it looks like this too.
I am grieving. We have been so lucky up until this point and I have felt lucky, but not now. The wind has left my sails.
Time will tell when another will occur. I must wait and see what is going to happen. How often and what kind. She sees her pediatrician next week for a check up so I will talk to him about it then. Unless something dramatic happens and we are in the ER earlier. I hope not.
For now, Sarah is her usual, sweet, happy self. I so want her to stay that way. Needless to say, we will not be doing any more flexibility exams! As the pain from that seemed to be the trigger.

A sick child

Thousands of miles away
Called me last night
Mama, I'm sick
A mother's heart flips over
And now I wait
For doctor visits, tests
Too far away
Anxiety swirls
Today, no word yet
Excruciatingly difficult
For me
And finally a call
So far so good...
I take a breath
And carry on.

Heaven

This is it.
Simply this.
Entirely this.
For me.
Heaven.
On earth.
Provincetown.
This is my goal
by the end of my life.
To live here.
And I will be happy.
It's in my blood.
My ancestors sleeping in their graves.
This is where Sarah and I belong.
Every day.
Living.