I wanted to share some of the ways I've managed to keep Rachel compliant with her medical care.....and with a smile on her face! The CF patients are now required to wear masks inside the hospital except for the examine room. The day I was told this and gave Rachel a mask, she wasn't having it. I said, "Hey, look at this mask you get to wear. Why don't you go ahead and put it on?" She promptly said, "No Thank You". "Well, crap!", I thought. How am I going to get around this one? So, I thought long and hard and then it hit me....."We'll make it into a disguise!" Why it took me over a week to think this one up is news to me? So, I spent quite a while on the computer searching for free printable children's masks. After I saved a few, I asked Rachel to come to the computer. I said, "Rachel, wouldn't it be so fun to wear a dog mask to Tripler and trick all the doctors. They will never guess it's you. They'll think I brought my dog to clinic." As I had prayed she'd respond, she said, "That's a great idea! We'll trick them good." "Hallelujah", I thought.....I managed to get through round one successfully. We talked about it off and on for a couple months (we brewed a really good plan to trick everyone). When we were about a week a way from the next clinic appointment, I printed a dog mask. While Rachel colored it, we talked about our plan and what we thought everyone at clinic would say. She was so excited. Once the dog mask was colored, I cut it out and stapled it to the mask Rachel had to wear to clinic. I worked like a dream! She wore it with pride, we "tricked" everyone, Rachel was happy and so was I. Whew.
Some other things I do with Rachel are -
1. We call Prevacid and fluoride tablets "puppy treats" (Rachel loves pretending to be a puppy).
2. I don't call her medications, medicine. Enzymes, pills, vitamins. It upsets her to call them medicine.
3. "Kicking Mucus Butt" is what we are doing when Rachel does chest therapy & breathing treatments. She
likes this. I'll say, "Ok, go get your vest on so you can kick mucus butt. We can't have mucus winning, can we?" She usually says, "NO WAY!"
4. Also, during chest therapy & breathing treatments, I let her pick a show to watch.
5. I give Rachel choices. I give her the choice to pick puffer or nose spray first, bath before or after chest therapy.....lots of choices even not related to her medical care because there is so much she can't have a choice about. She gets to choose her clothes (within reason -ha), how she wants her hair (puppy ears or down), grilled cheese or hot dog for lunch, you get the idea.
6. We talk. Rachel is beginning to ask about CF. She asks, "Mommy, did you have CF when you where a little girl?" "Do my friends have CF?" "Why was I just born with CF?" She will also say, "I don't like having CF." "I don't like mucus in my lungs." Thoughtful questions from a 4 year old. So, when it's on her mind, I stop what I'm doing and we talk. I acknowledge her feelings first and then we talk about the hows and whys (the best way I know how).
7. After a clinic, we do something fun - an afternoon at the beach, ice cream, playground, Chuck E Cheese (a favorite lately), etc. Try to mix some fun in with the not so fun.
8. When I'm feeling really brave, I let her practice throat swabs on me. The doctor gave us extra swabs so she can practice on her dolls & me -ha. We role play. I've started having her speak up to the doctor before throat swabs and ask him, "Will you please be gentle?" I think she feels she has some sort of say.
9. We play doctor sometimes. She has a doctor set with all the tools. She really likes getting to be the doctor for a change.
10. We don't harp on CF! We do what we have to do and get on with our day. Even on our worst days, we try to have some kind of fun. And we do have bad days occasionally.
So, There you have it. That's what we do around here. Try to make the best of it.