|Tips from Parents and Caregivers
|We will continue to add to this page based on input from the Email Discussion list. If you are not currently on the Discussion List – please join us.
Things to keep in the car:
Put an ice pack in a ziplock bag and tape them to the outside – Jen
An AMT clamp will help keep extension tubing from disconnecting
Containers: Pampered Chef Stir Pitcher – helps mix the formula – recommended by Michelle, Jen and Sheila
Lucy has begun measuring her snacks and lunches for school. She takes the scale and weighs her pretzels, chips, goldfish, etc. Puts them in baggies, and marks them for snacks. She also gets the measuring cups and measures out her pasta or corn. We use prepackaged jello, applesauce etc. We keep her pasta in individual containers in the fridge (she eats 1/2 cup for a sering). She has a drawer in the fridge devoted to just her things. We have a lot of discussion about food, what she can eat, etc and I am very upfront. When she asks about meat, regular cheese, etc, I just tell her it will make her very sick and she could die. I figure a little blunt fear is better than a maybe in this case and Lucy understands. She uses ” I’m allergic” to describe these NO foods. We also have “free foods” that she can eat all she wants if she just tells me how much. These are the things without protein– hard candy, apples, tomatoes, mushrooms, etc. If we don’t have a scale handy then she knows to count out the snack. She does this at school with pretzels etc. She actually has enough tolerance in her diet now that if she eats a few of these types of foods without me knowing the exact amount it won’t hurt. You might try the premeasured portions of aspargus in the fridge. And just tell her, “you eat more and you will get very sick”. I know I am hardcore, but someday they will have to make the decision on their own and Lucy is capable of understanding the consequences. –Julie
Know the nurse’s home phone #
Caring for the Caregivers:
Take time for yourself even if it is 15 minutes to read, journal, meditate, stretch…
Go for a walk or run.
Meditation and breathing is good for a break