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.