Positive Actionable Items to Deal with Crohns

[SupportiveMom]

Dani is a do-er, someone that likes to create and physically do things (even as an infant she hated sitting still). This disease takes away some ability to do that so I have been trying to come up with things we can do as an outlet, as sports have gone by the wayside a lot since dagnosis. Dani has started her own sketch book to express herself. She also is working with the school to get a Pajama day, where kids donate $1 and wear pj's to school (the $ will go for the Gutsy Walk fundraising).

Given our kids are limited in energy many times (today Dani stayed home again), what are some positive things your kid does to deal with Crohn's?

 

[DanceMom]

A likes to stay busy, even when she isn't feeling well. She dances, is active in church, and loves to play outside.

We also participated in the Take Steps walk last year and will probably do it again this year. It helps us all to feel like we are doing something positive and gives us a sense of control over this stupid disease (even if the control is imagined).

 

[CrohnsKidMom]

It may sound cheesy, but we really have just tried to trust God to take care of my son. That has given us all a ton of peace of mind. We also just try not to focus on the disease too much. I don't want it to rule everything we do. Whatever my son wants to try, as long as the dr says it ok, then we let him do it. He swims and plays hockey. We love hockey! I find helping others in a worse situation than your own puts things in perspective too. I know there will be rough days in my son's future, but God will get us through it when it happens.

 

[Maya142]

My daughter learned how to knit over winter break. She was in a lot pain and just not feeling well so she couldn't really do much. She said it was a nice change from reading and watching tv (though actually she's gotten good enough that she knits while watching tv now!). It's nice for her to make things when she's home from school, I think it helps her feel like she's accomplishing something.

 

[SupportiveMom]

Thanks for some great ideas. I think it is important to find something positive when dealing with this stuff. I think we are still finding our way with indoor activities. Maybe because its winter and so miserably cold it is making it worse!

 

[Gmama]

I know what you are going through. LJ has no stamina for sports since this all began. Typical boy, plays more video games than I would like but he does really enjoy beating the levels. We also got him a camera which has worked out well. He is really proud of some of the pics he has taken just hanging around the house. We try to do some family movie or game nights too. It's tricky finding the non sports stuff at this age because it seems like everyone is doing some type of organized sports.

 

[Gmama]

BTW, how is Dani feeling? Did you end up calling the doc Monday?

 

[SupportiveMom]

Gmama I called doc, doing stool sample test, thinking now it may not be c diff. Waiting for results. We are very confused. Dani stayed home from school yesterday which is not like her. She goes just to be there, even though she sleeps at lunch, and opts out of activities during the day. For her not to even do that is an issue. Prednisone tapering is sending her through a loop too. We are on the slowest taper imaginable and still shes getting effects. That what happens when you are on it for 1.5 years

 

[SupportiveMom]

Jigsaws are a great idea! We uses to do them when the kids were younger at least now they could probably do a 1000 piece puzzle.

I'm trying to break away from tv watching where possible. I logged into netflix for her on her laptop and now it is her go to thing. She has seen way too many movies!

 

[DustyKat]

If you do like jigsaws then wasgij’s are brilliant…

The Wasgij is a jigsaw puzzle whereby instead of the box showing the picture of the jigsaw you build, you have to put together what the people on the box are looking at. The clues of the puzzle are normally provided on the box lid and one has to use their imagination to put the picture puzzle in place.

So the finished jigsaw is actually what the four people in the foreground of the attached pic are looking at.