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!

 

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.