Much better

Christmas went very well as far as Sarah was concerned. She became a temporary full time resident of just 2 rooms. Her bedroom and her own special green living room. There was no mingling with guests and family unless they came to visit her. And even then it was one-at-a-time, thank-you-very-much. And please speak softly! I moved her rocking chair, stander, toys, books, dvd player and TV into her living room and she hung out there or rested in her bedroom. I kept the doors shut to the hallway since people were up and down it frequently.

I noticed that after a couple of days I could leave the doors open as Sarah was becoming accustomed to the sounds of the boys and visitors. I could see her listening for them and she seemed to enjoy it, as long as I narrated for her what they were doing.

This arrangement was great for all concerned. The boys could be 'boys', visitors could come and go, ESPN could be on 24-7 and it gave me the time to enjoy the holiday and the family.







This is my brother admiring the christmas cookies :)




John and Jimmy...the best Christmas present I could ever have. They refuel me. They keep me from drowning in the world of Sarah's needs. I am so proud of each of them. They are wonderful with their 'mama'. I've been a little needy lately and they rise to the occasion, bringing me right back into the light-hearted land of fun. Each year pulls them farther and farther from home, but when they do come home...The joy! The joy! The joy! And I once again become more myself.




Our Christmas Eve dinner!




Jimmy and I in masks from New Orleans





John was all about our traditional "Sand tarts"




Sarah relaxing away from the hubub.




Christmas morning!

A tree..and we are on our way

Well, it's been quite a week but we are getting there. I came down with Sarah's cold, but after a doctor's visit, a throat culture, antibiotics, and two inhalers, I venture to say I am making progress. Sarah seems to be coming along too, so far.
So the tree went up. We have lights and garland and beads. The ornaments are next.

Between picking up prescriptions I spotted Santa.

Can I just share this interesting fact? Santa had long hair. Yes, long white hair. Like, as long as Sarah's. Past his shoulders. Surprisingly, it looked OK. I just thought it was curious. I love watching the children visiting Santa. Some are eager and some are crying. I remember those days.

Oh, here is another interesting thing...while waiting in line to see Santa, the children were able to watch a video that was set up on a tv, right next to the line. Is this what our next generation is coming to? They can't even be expected to wait in line without some type of entertainment on a screen? Wow.

...In MY day we waited in line for HOURS with HEAVY coats on and NOTHING TO DO!!!!! How did we ever survive?

Ha!

I am picking John up Wednesday morning at the Amtrak Station and Jimmy is flying in 'sometime'. That's Jimmy. Last minute Sam. He is enjoying a few days in New Orleans before flying up here to Boston. I hope he takes lots of pictures!

And now for some exciting news...it is snowing! The first of the season, maybe we'll have a white Christmas afterall.

And also, John is turning 22 the day after Christmas! Christmas and John are always intertwined. His due date was Christmas Day, we left for the hospital Christmas eve after I had put Jimmy's presents under the tree. Jimmy was 3 and my mom and brother stayed with him. But because John was such a big baby, it took me an extra loooong 2 hours to bring him into this world, so he was born at roughly 2 am on the 26th. He was on time, but I sure wasn't! So Christmas is always about John too.

And from the song 'O Holy Night', there are the words .....♪Oh, hear the angel voices♪...These are my favorite from any song i've ever heard, because it reminds me to be still and listen. Because that is when you hear, the angel voices.

Christmas?

OK. I confess. I have not done one thing yet for christmas. No gift purchases and no tree aquisition. Nada. Which, apparently, is not good. Because my girl is now sick with congestion, coughing, paleness... i cannot drag her out shopping in the last minute chaos. Or roll her through a chilly tree lot.

What to do? Online shopping? Probably. The tree will require some thought. And so it goes. It doesn't help that after getting home from work late at night, I get caught up in the middle-of-the-night Christmas movies and don't get to bed till the wee hours of the morning. Which only lasts until 7 am or so because Sarah wakes up coughing. Once she starts, she cant stop until I get her up. So today I can hardly keep my eyes open.

Tomorrow is another day.

IEP

Sarah's IEP was this morning. There were a couple of people there that had not met her yet, and that was OK. It was an informational session for them. Fine with me, the more people that come to know her in our district, the better.

Anyway, it went really well. I have pulled Sarah out of OT, which they were fine with. And her theraputic riding will continue, which they were also fine with. She remains on a homebound program, with my teaching her, with guidance from a teacher.

Mainly, this year coming year will focus on the Mytobii-using it for communication, academics and fun-time. I want her to practice reading paragraphs and then I want to quiz her on her comprehension. I hope to teach her to work through levels on the tobii, that I program. I want her to be able to tell us to quiet down using the tobii.

Oh, there are so many things....that I want for her....but we shall see what Sarah wants and what she is willing to work for. Because that's what it's all about. Her motivation. Her drive.

The sky's the limit, but if she only wants to go as high as tulip tips then I must be content with that. And I will be, because I will know I have offered her the world, just as I have all my children.

What they do with it is entirely up to them. She is no different in this regard. Ultimately, their lives belong only to them. And I am very respectful of that.

So we shall see.

Taking a breath

Today was windy and rainy. A perfect day to stay in pjs, watch Christmas movies, do laundry and snack on all the goodies left over from the Thanksgiving week. I cancelled her riding lesson, the wind howled and the sheets of rain washed our windows and the car.




I tried out new YouTube videos with Sarah, we picked our favorites and saved them to revisit later.
I spoke to John, who is back at school, sporting a new knee brace. He has a followup appointment with the orthopedic surgeon right after Christmas. More will be decided then. For now, he is on to final exams and trying to secure an internship for next semester.





And we are refueling here at home. Sarah is back to her rosy self, snuggled up in thick winter pajamas in front of a lazy fire. She is happy. It was grilled cheese and tomato soup for supper, I replayed the Rockefeller Christmas Tree Lighting Special, that was on last night, for her. She loves the singing.



And this is an action shot of our happy, happy girl. I love her happiness. It's contagious.





And now she sleeps.

Happy belated Thanksgiving

It was, for me, the best of times and the worst of times. As per usual, for me, I focus on the positive. And there was so much positive.

Jimmy and John. Yay! Home. Here was the best moment of the week, for me...

It was the morning after Thanksgiving. It was cool, gray and misty outside. The house was under a foggy blanket. It was quiet, sounds being muffled. Sarah was awake early and so was our kitty, Mia. I got up, changed Sarah and fed Mia. Sarah remained in her bed, chirping happily to herself and Mia, with a full tummy, had curled herself up at the bottom of my bed.

The rest of the house was silent, the boys sleeping. Not a peep. Clothes, computers, cellphones and shoes scattered here and there. Everyone still tucked in.

The house was full.

And I was completely happy. I cracked open a bedroom window a bit to let in some damp sea air and crawled back in under the covers.

And we all rested. Under one roof. It was perfect, for me.

Soon enough, the house would come to life, there would be laughter and breakfast, donuts and phone calls. But that early morning hour was the best of all.


So my Sarah, she had a rough few days. Suffice it to say, holidays are getting harder and harder for her to tolerate. Change in routine and noise. These are big problems. And she struggles. It makes her physically sick. And when the boys are here I want to spend time with them but she requires more attention than usual from me. Can we just say, frustrated? Yup, that's what I was.

But, moving on, John hurt his knee at college and we found out today he has a tear that may need surgical repair. Oh, happy day. More information will be gained tomorrow.

And in no particular order, some pictures from the week :)

Good morning Sarah!!



John's supplies-icepacks, tylenol and a cane




Wearing Jimmy's aviators :)




Jimmy and my brother Jimmy




Mr John Willis



Cousin Brian



And Jimmy






And Jimmy and Regis

Time for a post

It's been a while. Yes, I know. And Miss Sarah is doing well. She had an eventful week, in the fact that she finally had her extra permanent tooth pulled. The oral surgeon used laughing gas and novocaine injections. And out it came. Hooray! Not a cry, not a whimper...well, maybe a tiny whimper when he was injecting the novocaine. But that was it. She went home with a wad of gauze stuffed in her mouth and that was that.

Now we wait six months to see if her upper lips pulls back those choppers of hers a bit. If not, then we will attempt four brackets on the front teeth to reign them in. Time will tell.





Today she rode. It was such a windy day. She loved the wind, it was a warm wind and she could not have been happier. In fact, it racheted her system up and she remained ridiculously happy the rest of the day and giggled into half the night, finally falling asleep at 11:30 pm.


















Thanksgiving is right around the corner :) We're getting ready.

A difference of opinion is ...OK

The other day we made a trip to see Sarah's GI specialist. She sees him every four months. And he is not that happy with her weight. Not alarmed, but seemed to want me to offer her liquid supplements inbetween meals. She weighs 69 pounds and is holding steady at that weight. Her appetite is good. He wants a few more pounds on her.

He says that for people like Sarah, with her high level of disability ie-no walking, that as they get older through the teen and adult years, they have a harder and harder time maintaining their weight. He said there are three levels of intervention in this case. The highest level is a gtube. The next level would be supplements and the first level would be adding calories/encouraging larger portions of food usually eaten.

He could see that I was not willing to change anything I was doing right now. She eats well and has a pretty balanced diet as far as I can tell. So he backed off. LOL. He could see the Mama Lion beginning to roar.

This is what I told him:

If I give Sarah a liquid supplement inbetween meals, she will not eat her next meal. She will be full. He said that if she was eating a half slice of bread and cheese curls for her next meal, he would rather she had the supplement.

But she eats WELL. Good food. Cheese, meat, vegetables, pasta....

So he let it go. I told him I would rather she ate food than drank liquid. And he appeared to agree. LOL.

And, if someday she does require a gtube for adequate nutrition, I will seriously look into giving her a blended diet of regular food through the gtube, rather than canned nutrition. If at all possible, that is what I will do.

But we are not there yet, I don't want to jump the gun. Right now she is OK. She has finished growing taller, she is maintaining her weight and we shall see.

I pray to the heavens she is still at 69 pounds at our next visit. Ha!

Sarah in Action

This is a loooong video of Sarah enjoying a Youtube video on her Tobii. I'm posting it here so that if my computer crashes and I have to run it in recovery mode, I won't lose it. Don't feel it must be watched in it's entirety, cause it's all kind of the same thing :)

Here are a few fast facts:

-her voice sounds deep because she has a cold

-she is in her stander, which she spends about 1 1/2 hours in per day

-Mia the cat always has to be in on the action

-She likes being able to stop it and start it by herself, and she likes my talking about it.

-I cannot leave the Tobii lying flat anywhere because Mia walks on it

-I want to paint these walls sky blue.

-Sarah has discovered Sarah Brightman and Andrea Bocelli, which she is listening to here

-Sarah reaches for the right edge of things, hoping she will be able to 'turn a page'

And that is all there is to say about this.

Happy Halloween!

I learned years ago that holidays are not for Sarah. She does not like the commotion and the NOISE. This includes Halloween. It is not her thing. This includes even giving out candy. People knocking at the door are startling to her. She finds it unsettling and she gets cranky at times. So, happy halloween everyone, but there will be no costumes on this blog-lol. Yes, it's a bummer, cause I loved celebrating it with the boys as they grew up, it was lots of fun. And there were lots of photos and lots of candy to secretly rustle through after they went to bed :)
But those days are over and we are concentrating on the Tobii this week! Tomorrow the represenative is coming out to show me how to make communication squares, grids and pages. I have a lot of questions for him. Meanwhile, I am playing some of Sarah's favorite Youtube videos on it for her and she is mesmorized. She leans in REAL CLOSE to get a good look and is practicing touching it, which then turns the videos off and on. She is having a blast! I am so happy.

My sickie chickie

We are having a wonderfully quiet weekend while Sarah is feeling poorly. Yes, the weather is beautiful, crisp, shiny yellow and sweet smelling. But we prefer the comfort of the inside, surrounded by blankets, music and yummy snacks.

And, we get to do it all over again tomorrow! Pure bliss.