A great weekend

Sarah had a very good time this weekend. Both days were busy and she loved both of them. I didn't have to work so we spent quite a lot of time out of the house even though it was the coldest weekend so far this year. There was no wind though, so I didn't have to fight with doors blowing shut as I moved Sarah in and out of the house and car.
We drove through the car wash (Sarah's favorite) and then I vacumed it out (her second favorite) and then it was sparkling clean(my favorite). We traveled to the Christmas Tree Shop and rolled through there at a leisurely pace looking at Easter stuff. Easter! Is Spring anywhere close?
There was a bath for her with new deliciously scented shampoo and conditioner, a visit to one of my girlfriend's home whom I never get to see enough of, and which gave Sarah the chance to eavesdrop on our conversation, which she loves to do :)
All in all, good times.
In between, I am trying to keep those calories up without making an issue of 'eating'. Here's a photo of my efforts at lunch on Saturday. Offering various delectables in hopes one of them will entice her (she ended up going for the homemade pizza).



And so tonight as I watch the Grammys she is wide awake in her bed. Doing her Sarah thing. Snuggled up and toasty warm. With grins and giggles.

Well, THAT was fun

Today was 'dentist day' for Sarah. I knew she was going to have a thing or two to say about it. The girl has an opinion and we are going to hear about it. And coming into any building and seeing a doctor/dentist is not what she wants to do. She is not the placid thing she used to be.
Sarah was always very quiet and laid back. You could take her anywhere, do anything and she never protested. Never fussed or cried. She always just went along. With whatever. She was 'too good', for lack of a better term.
There is a section in Sarah's yearly Education Plan paperwork where I am supposed to write down a paragraph or two explaining what my vision is for her future. Every year since she has been four years old I have written only one sentence. The same sentence. Every year. Because it was the most important thing that I want for her. And this is it:

My wish for Sarah is that she learn that her desires and opinions matter.

And so here we are. She has learned this fact. And she is expressing it loud and clear. And we have to deal. With her desires and opinions. And I am delighted. It doesn't mean I do whatever she wants. It means that she now knows that when she makes the effort to express herself, I will CARE about what she is feeling and respond to her. Either by going along with what she has in mind or explaining to her why we can't. But the bottom line is - her desires matter. To me. To her family. And she finally understands this.

Hooray!

That said, I do not think the other people in the dental office would be so 'delighted' to listen to Sarah express her angry feelings. So I had a plan...lol.
And this was it:

Ignore the screaming. After explaining, of course, that this must be done. And that afterwards we would go home and have lunch.

And so in we went. And the shreaking began as soon as I placed her in the chair. She was NOT having any of this. And the right hand was fisted and shaking. She was mad. So, Of course I told her sternly that she had to have her teeth cleaned even though she didn't want to. And then I proceeded to tell the hygenist to talk to me about something else entirely. So we chatted for a minute or two about her grandchildren and before we knew it, Sarah was quiet, listening to our conversation and ready to be cooperative. Hooray!
From there on out it was a breeze. She did great and still has no cavities! Go Sarah!!

Standstill

Today was another weigh-in for the miss. And she remains squarely at 68 pounds. At least she is not losing right now. But with all this fattening food she's eating one would think she would surely put on a pound. Not so. So on we go. I am a bit discouraged but am trying to remain positive.
In all other areas she is in good shape. I guess it's just that weight loss/gain is an indicator of overall health. And I've never had this struggle with her before.

For Fun

Scrapbooking Photo Tinks by WiddlyTinks.com

Up and ready to Go!

I thought Sarah would be tired today. Afterall, she has had a busy week. Tuesday she had riding, and yesterday she had Botox. Both required lengthy travels and brought her out of her usual routine, ie. meals, naps, etc. And then today was 'back to school' day. She has not been going to her usual weekly OT appt at school because of the H1N1 in the community. But, today she was scheduled to return. After such a busy week. I wasn't sure she would make it.
But! She was up bright and early and ready to go! So off we went. She did great. She was interested, cooperative and attentive. She even insisted on going out for lunch afterwards! Jeepers! Where did I get this child? This isn't the one I had last week! When we got home I asked her if she wanted to go in for a nap or get in the stander. She chose stander. Very surprising since she is always out of steam by now. But nope, not today!...She's over there in the stander, happily turning pages of People magazine, shaking strings of beads and listening to Kate Bush.
She never ceases to amaze me. My wonderful, delightful, sweet girl. I am blessed. And entertained :)

Trip into Boston

Today we headed into Boston for Sarah's Botox injections at Spaulding Hospital. The best thing was that her appointment was at 1pm so I didn't have to yank her(and me!) out of bed in the morning.
It was a beautiful, very bright mid-winter day. And we had zero traffic heading in or out of the city. Mind you, I must get in quickly and get right out, because I am not a city girl. All the cars, trucks, people...not for me. My mom loved the city. She loved living in the city, shopping in the city, visiting the city. Go figure.
Anyway, it was a great day for a road trip, in spite of the destination. So in we went.
We met with Dr. N. and two medical students. I heard Dr. N. briefing them before she sent them into our waiting room. She told them about Sarah, her medical history, her unusual educational set-up, and why we were there. So the two young women came in, introduced themselves and we proceeded to chat about Sarah. They had plenty of questions. Well, Sarah was NOT happy about this! And she let us know, sending out a few loud protests our way. She really doesn't like it when you talk about her in front of her. I don't blame her, but some things just have to be done. I suppose I could stick her out in the hall next time. And, now that I think about it, I just might.
Then Dr. N. came in to give the injections. Sarah gets usually 8-10 in her hamstrings. More in her left as that's the tightest one. I hate that hamstring. I would remove it entirely if I could.
I heard Dr. N. say to the students, "Each of you take a foot and hold on tight, She's strong, She not some little thing, Don't let her fool you." LOL. A numbing spray went on first and before Sarah knew it, it was all done. She didn't make a peep. Didn't move a muscle. Not a one. Good as gold. We went for lunch afterwards in the hospital cafeteria and she ate really well.
So now we are home and in a couple of weeks I should see some loosening of her legs. I hope so.

Here are a few photos :)

Here's the view driving in.

Ok.........It's a view of 'My dream Car' driving in :)

Here's the real view. From my car.



This is Sarah after the injections, thinking about what the heck just happened.

Here's a view of a boston bridge from the parking lot.

On the way home I took a picture of a decorated tank along the highway. It has been there since I can remember, way back when I was three years old. Can you see the profile of the asian man with the beard?

Progress

She has gained half a pound this past week. Yay! I am on the right track. Gotta go feed her some cereal.

Good for her.

Some kinda bug

That's what I have. Feeling punk, hot then cold. Headache and just out of sorts. It's been for a couple of days and I am hoping Sarah doesn't come down with it. It's hard to care for Sarah when all I want to do is curl up on the couch under a blanket. But, we're getting by.

Tomorrow is her weigh-in day. I figure I will weigh her once a week on Tuesdays. I am hoping tomorrow brings good news, ie. no more weight loss. I wouldn't expect her to put weight ON just yet, just hoping she has stopped losing. She has been a good girl, taking in the extra calories. Some things she likes, others not so much, so we are still in the stage of finding out what works, without making a huge issue of eating. It is a fine line.

So tomorrow is the first weigh-in. Fingers crossed:)

Gone

And so my boy
my sweet smart
wise
boy
has left
for college
I will never
get good
at this
this goodbye
while I wait
for a new hello
sarah knows
for I am quiet
sad
for me
not for him
joyful for John
on this
I focus
I try.

More thinking...

I put Sarah's weight loss out to my Rett support group as it is very common with the kiddos. I have gotten some great suggestions to supplement her diet. It will be interesting to see what she thinks of the additions. Things like boost pudding, carnation instant breakfast in her whole milk, half and half instead of milk, various ready made meals full of chicken, mashed potatoes, stuffing, veggies...just lots of great ideas.

I had another thought too. I put Sarah on the birth control pill over the summer to ease up her cramps, etc and it has been working great for her. However, I am wondering if it could possibly be decreasing her appetite, thus the weight loss. From doing some reading I see that it can cause weight gain or weight loss.

Just something to keep in the back of my mind as we go forward here.

Results

So we had the weigh-in....

She has lost 4 pounds. That doesn't sound like much but when you only weighed 71.5 pounds to begin with (over the summer), it's a lot.

She has grown 1/2 inch though. Her BMI is 14.5. Too low, of course.

Bummer.

So I have been watching her eating more carefully this past week. Basically, she IS a bit more fussy about what she is eating, so when she turns something down, I move on to another choice. The back-up plan is cereal. She never turns down cereal. I better buy some whole milk :) We use skim.

I do not feel her GI system is too sluggish at this point. Things are moving well with a little help. Her belly is nice and soft and flat.

Mostly, what I am seeing is that when she eats, she just eats less, gets full faster.
So, I am thinking, that what she does eat should be more calorie rich.

We shall see:(

Worry.

Sarah has always had a hearty appetite. It's one of the reasons she has been so healthy, in my opinion. But lately, she has been turning food down on a few occasions or only eating half of her usual meals. And I don't know why. There are lots of possible culprits.

First of all, John and I are going to weigh her this week to see if she has lost any weight. If not, I will relax about it and figure that if she is not getting taller anymore, she does not need as many calories, and she intuitively knows it.

If she has lost weight then I have to roll up my sleeves and play detective:

Could it be that she has become more finicky? More opinionated on what she eats? More aware that she has a choice of what she can be served?

Or is she having trouble with the consistency of some of her food? Does it need to be easier to swallow? Does it need to be softer? Are some foods just too much work?

And there is always the issue of her slow intestinal motility. Is she 'full' and needs more Miralax to move everything along? Is there just not enough room to eat?

Or is it 'the' Rett Syndrome? Is it a deterioration? Is it inevitable? Will it lead to a G-tube?

I worry.

I need to weigh her.

This week with John.

It's a two person affair.

Sarah Sunday

*************************GO PATS!!**********************

Here we go!

A New Year!

And what do I wish it would hold for Sarah?

The first thing that comes to mind is that she will have a pain-free year, that her dystonia will be managaeable, that she will not continue to tighten. I think that is my biggest hope. To maintain what little flexibility she does have and for her to remain comfortable in her own skin.

Secondly is the area of her communication. Don't get me wrong, we do OK. But I am hoping she gets a device this year that she can use and that we DO use and that consequently, I hear more from Sarah. What a blessing that would be.

And the third is about her back. I am praying that her kyphosis/mild scoliosis holds steady with no further progression. The last thing Sarah needs is a surgery. She goes down like a stack of dominoes, all sytems unraveling. And then I unravel.

If Sarah has a good year, I will have a good year.

This I know for sure.



PS It would be nice to get her into orthodontics this year, but she needs to get one big tooth pulled out first...