Watching Our Girlish Figures

One thing we hear a lot about these days is having a positive body image. I do, I'm positive my body image is not good. This concept is important, though, especially for teenage girls who are prone to eating disorders. That is beyond dispute. Once again, however, a truism of health and wellness does not apply to Maggie. First of all everything about Maggie's self image is positive, so that's not a problem. Also, she is so small she is not even on the charts.

When I was expecting my kids I never once considered the possibility that anyone of them would be anything less than perfect. It really ever crossed my mind that any of them would have any health or developmental issues. I had no preference for boys or girls and I just presumed they would be healthy, so what did I worry about. All I wanted was for the kids to get Steve's metabolism instead of mine. Steve is tall and very thin and has never had an issue with weight in his life. I am not, not and have always had an issue. Even then I knew it was shallow and vain, but a girl wants what a girl wants. Ahh, ignorance really is bliss.

Both the boys are big, but not over weight. They eat healthy and exercise but I wouldn't say they have Steve's metabolism. The only one that really got it was Maggie. She is like a hummingbird. She has always been so tiny that it has exacerbated her other health issues. Obviously that's not just attributable to just metabolism but also to her overall health history.

I remember a three year period from about age 4 to 7 where we could not get her weight over 25 lbs no matter how we tried. She would gain a pound or two and then get sick and lose it again. We tried different formulas, adding oil and all sorts of other tricks to put weight on her. Nothing worked until her health stabilized. Then she slowly starting putting on weight until she hit the 50lb mark. She stayed there for quite a while too. At age 13 she got the trach and suddenly wasn't using so much energy and burning so many calories just to breathe and we were finally able to increase her weight. She's still small but growing. Good.

Yesterday she had her semi annual check up at the GI clinic where they monitor her size, weight, ratio, feedings, and nutrition. Maggie is now 17 years old, weighs  75.3 lbs and is about 4'7" tall.  Not exactly statuesque, but
definitely an improvement over her past. Imagine my surprise, then, when the nurse practitioner said, "OK, it's time for a diet." My mouth fell open. I said, "WHAAAA? She's just a slip of a thing." (though I have to admit lifting her a dozen or more times a day is not fun).

The issue is not the number on the scale, but the ratio to her height. She will likely not grow anymore in stature, so the feeds have to be adjusted to keep her from gaining weight. In the past six months she's gained 5 lbs and that is just too big of a jump in a short period.

So Ms. Maggie is on a diet. She doesn't need to lose weight, we just need to slow down the pace of her gaining. This really threw me for a loop. After 17 years of doing everything possible to get every calorie into her, we have to change our thinking. And, naturally the normal rules don't apply. Instead of celery and salads, it means cutting her overnight feeds. She has feedings pumped in while she's sleeping, but we will cut those in half. Hopefully she won't even notice the change.

Hmmm. Maybe I should try that.

The Weight of the World

Maggie is better. She does not have pneumonia, but she's on antibiotic #4. Hopefully this is the ONE. They did do a culture, so if this isn't it, we will know what will work in a few days.

Today is the last day of school before the Christmas Break. Any other day I would keep her home, but I let her go today. I have to go by the school now to retrieve the power wheelchair so Maggie can practice over the break. I can check on Mag at the same time and drag her out of there if she's not doing well. Of course I can't fit both Maggie in her regular chair AND the power chair in the van at the same time, but we will figure that out. The power chair can come home on the bus if need be.

Unless you have to deal with it every day you cannot imagine how big all this equipment is. I learned yesterday that Maggie's wheelchair weighs 97.2 lbs. That's empty, WITHOUT Maggie sitting in it and without all the machines hung off the back. Maggie weighs 61.5 lbs and the suction machine, oxygen tank, communication device, tray , pole and emergency trach supplies always on her chair weigh another 20 lbs easily. Moving Maggie around requires manipulating almost 200 lbs.

Of course it's on wheels and designed very well, but perhaps you can appreciate the frustration we experience when we encounter the barrier of a step or two. There's a reason for curb cut outs. We cannot just lift her. And she's tiny. Imagine a grown man or woman.

Maggie cannot stand up or even sit up on her own. Therefore in order to weigh her, we simply just put the chair on a special scale and subtract the weight of the chair. Every time we get a new chair or change it around at all we have to re-weigh the empty chair. I had a sticker on the back of the chair with the weight, but it must have fallen off. Besides, I think we've added an additional part of the head piece since she was last weighed anyway. I'm putting the information on the back of the chair and taping it over with a see through tape so we don't have to do that again any time soon.

The medical assistant was not pleased at having to wait for us to unload Maggie and take all the equipment off the chair so we could weigh it. She suggested I get on the scale alone and then get on again holding Maggie.

Um....no. Thanks, really, but no.

The thought of my weight blasting through the clinic on the giant digital read out was not the least bit entertaining. Besides, we needed to know the information for the next time.

She was not happy with me and decided to stand impatiently while we stripped the chair of the equipment. I'll just unload everything, and take Maggie out. Once that was done she changed to a snails pace. I was trying to hold Maggie, who was coughing and squirming while the woman very S L O W L Y weighed the chair. By the time I put her back in I think I lost a pound or two.

SO it wasn't all for naught.