Make it snappy!

Maggie sat patiently in her chair while Steve tried yet another repair of her headrest. If we can get it somewhat stable, Maggie and I can go out and have some fun. Being stuck in the house on Spring Break is no fun. I just received an email that a repair guy will come to US tomorrow! Yay!!!

Once Steve was done I knew Maggie had things she wanted to say but she also needed to eat. I asked "do you want your talker?" she signed "yes." I said, "Ok, do you want me to feed you first?" She slammed her hand down in an emphatic NO!  She wanted her talker so she could communicate. I laughed and started setting up the talker. That process takes a few minutes. I have to affix the tray and the pole and then the talker. She turns it on and it has to boot up, which takes another minute or two.

I finished and looked at her and said, I know exactly what you are going to say" She smiled wickedly and made this sentence

"Mom, breakfast now, I'm hungry." 

Food tastes so much better when it's ordered.

Steve also entertained Maggie by juggling oranges. if you're stuck in the house, it's good to have an entertaining Dad. (see I didn't even call him a Clown!)

           

If it's Tuesday this Must be Belgium

Woke up before the alarm at 6:15 worn out because I was having the type of dreams where I’m running around getting nothing done. I can’t imagine why. I realize immediately that I forgot to buy half and half for the coffee. Bummer.  My morning ritual would be slightly altered, I would have to drink my coffee black. Brush teeth, but no time for a shower. I get dressed and go downstairs.  Take the report from the nurse discussing Maggie’s low heart rate overnight, which was cause for concern. We discussed a change in her schedule due to Maggie’s upcoming overnight hospitalization for her sleep study. See nurse out, bring in paper from today and yesterday (which was never opened.) Suction Maggie, who then falls back to sleep. Run back upstairs to quickly grab some paperwork that needed attention and while I was up there I faxed the new oxygen orders to the school nurse for her files. tan back down because Maggie cannot be alone. Maggie is coughing and needs suctioning again. Worked on more Maggie papers due to a major screw up in her services (which I will discuss only when it is completely cleared up). Called the social worker to get a status update about that screw up, leave a message, receive an email response. Respond to the email. Maggie wakes up, needs suctioning. I get her ready, change her diaper, do the catheterization and put her in the chair attaching the tray, pole, and dynavox. Feed her and then play her music while I find her shoes and a jacket.  Call the supply company to order food, feeding bags and other supplies. Call the wheelchair company about the new caster for her chair and other parts that need changing. Take Maggie down in the elevator. Unload diapers and other supplies that arrived yesterday and sort them on the shelves in the basement, find dog and head for the bank to address issues with the account I use to pay the nurses. Run into a friend en route and chat for five minutes until Maggie gets antsy.  Push Maggie in her chair with the broken front wheel that sounds like fingernails on the blackboard with every revolution, and, since it’s such a small wheel, there are hundreds of revolutions. Go to the bank, chat with the employees, get the new checks I need. The bank manager offers to try to fix the wheel with bicycle grease, but I decline politely because the new wheel should be here today (they never called back). Suction her before leaving the bank. Walk home through the park so the dog can run a bit. Can’t get the chair past a city gardening truck blocking the road and have to take Maggie off road over the grass to maneuver through the park.  Worry about the wobbly wheel. Greet kids who stop practicing soccer to stare at Maggie. Ignore stares. Stop to feed Maggie at the other side of the park. Suction her again for the last few blocks to home. Stop at small store to buy half and half and bread. Carry groceries with one hand, steer chair with the other.  No curb cut, have to lower chair off the curb being careful not to land on bad wheel. Get home lift her out of chair, cath and change her, put her back in the chair, put on Maggie’s music and take her into the kitchen because she wants to cook. We make spaghetti sauce, stopping to suction Maggie every five minutes.  Nurse arrives. I give report and we discuss Maggie’s symptoms. Phone rings, it’s the new physical therapist for the school year. Discuss Maggie’s needs and medical situation. Hang up.  Text the classroom nurse to advise the bus schedule. Leave to go to Walgreens to pick up various medications and supplies. Have to wait while they fix a mistake in the charges. Smile apologetically at the people in the line growing behind me. Put two giant bags in car and see Starbucks beckining. In desperate need of caffeine, head  in and steal 10 minutes. Ahhh. Give my spot next to the electrical outlet to two college girls who need to do their final exam. Marvel at the differences since I was in school. (before internet OR Starbucks) Fully caffeinated,  walk back to the car where I run into an acquaintance who asks the same questions everyone does:

“You’re not working????  What do you DO with yourself all day?  Aren’t you bored?”

 Smile politely. 

More gruel sir?

Turns out Maggie diets about as well as her mother. One week and it's over.

After a week of cutting her nighttime feeds something was off. I had to call the nurse practitioner today. Mary Margaret is unable to stay awake at school. It's been going all week, since right after we cut her feeds. I waited because her body should adjust to the lower calorie level and I wanted to make sure she was getting enough sleep at night. Last night she was asleep by eight and other than dealing with coughing fits and suction issues she slept until 6:30AM. She slept through all the other procedures. I figured that should take care of it,  but she slept all day in school again.

I left the nurse practitionery a message telling her what was going on. Maggie is not sick, she not lethargic (which is sign of very serious problems) she's just exhausted.  She called back within the hour and said to back to where we had it. Maggie is likely getting hypeglycemic from the change. Where I would go and sneak a carrot --ok a COOKIE -- to satisfy my hunger, she cannot.  But her body needs more energy. 


That's my Maggie. Tough as nails and as delicate as an orchid. 

Tonight we crank up the feeding pump and party all night long.

Barkeep! Vivonex all around!

 

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.

A Lot to Swallow

I linked a post from Nextcourse yesterday which featured Maggie and the program they sponsor at her school. I received a lot of comments from various sources asking questions and I need to set the record straight. The person writing the post is not the Chef in the classroom and has never actually met Maggie. Not surprisingly, then, the post wasn't 100% accurate but the errors did not matter for the purpose of her post. Maggie loves Chef M and that program, and the tastes of food she has experienced have been very positive experiences for her, but this is not her first taste of food.  I will also say in the spirit of full disclosure that there is NO WAY Maggie typed in that she wanted cinnamon, but she likely indicated "yes or no" when asked.

Maggie has had her feeding tube since the day she was born and with the exception of a trial period of about 1 month, has always received 100% of her nutrition through that tube. That doesn't mean we didn't try to get her to eat by mouth. We tried and tried and tried, but it was not to be. Swallowing is a very complex motor function,. We all do it automatically, but with Maggie there are no automatic motor movements. Everything is deliberate and comes with great concentration on her part. If you try to concentrate on your swallowing, you won't be able to do it.

Test that. Try to swallow five times in a row right now.

Many kids with Cerebral Palsy figure it out, some don't and need feeding tubes. People without cerebral palsy need feeding tubes for other reasons. In Maggies' case there was far more than her motor function to deal with. She was born with her esophagus in two pieces. That had to be surgically created and, while the surgery was amazing, the surgeon can never do as good a job as nature when it comes to function. When this problem was added to her multiple other gastrointestinal problems it just wasn't going to work. Maggie's body needs a TON of calories to function. She could never eat enough calories to sustain her needs.

But we did try. She could never do liquids, but she was able to eat pureed baby food. Applesauce and plums was her favorite. The first time I got her to eat I thought we were on our way. But she would get sick and forget that skill and we would start over. Eventually we gave up any effort at nutrition by mouth and went only for tastes. As her respiratory issues got worse, we stopped that too because she seemed to get overwhelmed by the saliva that food created. Besides, she was allergic to so much stuff, it was hard to find something interesting to try that was soft enough but didn't have dairy, eggs, peanuts etc. We always give her licks of candy canes, which she absolutely loved,

Now she is bigger and stronger and more body aware and I am delighted she has this opportunity to try new things, especially with all of her friends. Her nurse is with her and if she gets overwhelmed, Nurse Janice will stop it. But that doesn't happen because everyone is careful and aware of her allergies.

Also to clarify - Maggie does not miss eating. It is not cruel to have her in cooking classes when she cannot eat. She loves it. Remember, she does not have the pleasurable connotation with food that most people have. She experiences hunger and requests food. In fact she "eats" every two hours. She is satisfied after a feeding, but for her there is no connection to the oral act of eating. She cracks up when she sees the tube and the can of "medical food" because that is what satiates her.

It is difficult to remember, sometimes, that everything about Maggie's life is different. It's difficult not to overlay our own values and concerns to her situation. But it doesn't work like that. Maggie is not only marching to her own drummer, most of us cannot even hear the music.


For those seeing it for the first time. the picture above is her Chef Halloween costume from a couple of years ago. Steve made the stove to fit over her wheelchair.

It what's for dinner

Grandma Carmel came over for dinner on Saturday night. It was very casual. Things were in disarray from the work in the kitchen and the half decorated Christmas tree. We just pushed the mess aside for awhile and sat down to eat.

On Friday morning I told Maggie that Grandma was coming to dinner and asked if she wanted to help me cook. Of course, there was a resounding yes! to that question and her excited arm movement that foes along with it. I explained that the first thing we had to do was decide what to cook and made several suggestions. All suggestions met with rejection from Maggie.

Chicken? No!

Roast beef? no!

fish?no!

pasta? no!

Hmmmm. I started on other things pigs feet? No! [good – never had ‘em], chicken lips? No! (with a huge laugh.)

In mock exasperation I said,”Maggie, we have to eat something, what to do you suggest? That we all have Vivonex?” This brought uncontrollable laughter and yes! yes! yes! Vivonex is Maggie's’ food. It comes in 250ml cans and she is fed every two hours. According to the can Vivonex is ,“medical food for tube feeding or oral use” (she is strictly a tube feeding girl) and it is “formulated for maximum tolerance.”

YUMMY! This is exactly what I want to serve at a dinner for my mom.

I promised Maggie that I would put a can at every place and she was beside herself with laughter when I followed through.

Sometimes I have to stop and be amazed at the life Maggie leads and how I take it for granted. She doesn’t get to taste anything , doesn’t get the joy and camaraderie of dining out or dining at all. Her food has to be prescribed by a doctor and is delivered by a medical supply company every month. We had to go through many different manufactured foods before we found one that worked. Maggie’s intense allergy to milk products coupled with her delicate constitution severely limited her choices, even in the world of medically prescribed food. After various trials and errors, the GI nurse practitioner prescribed Vivonex. Turns out that maximum tolerance thing works!

I'm delighted too find a food that works, but that's not the amazing thing. More amazing is that Maggie doesn’t care about any of that. She is happy to be part of the action even if her seat is two feet away from the table.

If I knew it would make me as happy as Maggie, I would happily switch to her food. However, I'm not sure I have the same positive outlook that she does. Vivonex is manufactured by the Nestle corporation. I’m glad they make this stuff, but I think I’ll stick to Nestle’s crunch bars, if it’s all the same to you.