I read over the material that the specialist gave us when DJ was diagnosed with encopresis caused by chronic constipation. We are still awaiting results from his stool samples in order to determine if his daily dose of penicillin is causing the constipation issue, or if it is caused by DJ's special placement of his "plumbing system", or if it is caused by scar tissue from his previous intestine surgery.
Taking my cues from the handout we got from the specialist and all of your wonderful suggestions we came up with three new ways for DJ to achieve the stars and points needed to get his own camera:
- Take his new medicine without complaint - this is a big one since it is like drinking salt water!
- Log/inform Mommy or Daddy of a BM (accident or successfully done in toilet) AND always try the potty when Mommy or Daddy ask - this is because the doctor wants him to try regularly and for us to fill in a chart with all the details, so his help is appreciated.
- Make an attempt to make it to the toilet, or at least tell us of an accident and not hide it - this is key to the charts we have to fill out and the hiding or ignoring the accident is a big thing with DJ.
They are all still toilet-related, but we think they all are achievable. With the old chart he was at least 12 days away from getting enough points for a camera...now, he could easily get it in 3 or 4 days.
Thank you everyone. I so appreciate your support.
When you look at DJ, you would never think that he is so medically special and that his insides are so very unique. And there are times when I forget that he has a serious, often life-threatening syndrome. I never stop thinking of the other families I have "met" who are dealing with tragic, sad and painful medical issues related to heterotaxy. We are lucky. DJ is lucky...let's hope he stays lucky and this issue passes....pun intended!!!
So now, I am looking for high fiber kid-tested recipes. I have already started to add psyllium and ground flex seed. Any suggestions would be appreciated!
DJ is on PEG 3350 till September and at that time we will re-do all the tests and decide if further intervention or tests may be needed.
Thanks everyone for your wonderful support.
12 comments:
That new point system is perfect! So smart that it is still all potty related. And he will really feel he is earning those points. Great idea!
Looks like you've come up with some great compromises, and achieveable goals. Good job, give yourself a gold star. :D
It sounds like you have a plan and are getting good advise. I will keep you all in my prayers.
Take care - Kellan
am happy to hear that DJ is on meds to help. I think you've come up with a wonderful plan.
Our little ones are special. Yes, we tend to forget it sometimes. Sometimes, it may be hard to find that Happy Medium. When things are going great and life is being good we tend to forget about their syndrome. I always tell people that “Yes, I know we are lucky because Chloe has a good prognosis but along the way she may have obstacles to over come.” These are the obstacles that I tend to worry about the most.
Hugs and Kisses,
Anabella & Chloe
In my family, we use a powder called MiraLAX. It dissolves in any liquid. Recommended by our nurse practitioner. And, it IS a miracle. :)
My sister has a great flax-seed muffin recipe. Let me see if I can get hold of it.
Hang in there, Laura. You're a terrific mom. Dealing with some tough issues. xo
I think your new chart sounds like a great one! As for fiber rich recipes, we bought some Fiber One apple muffin mix and Little Elvis just loves it (even when I accidentally burn most of the muffins!) We've also tried this super healthy muffin recipe (http://www.foodnetwork.com/food/recipes/recipe/0,1977,FOOD_9936_131354,00.html) and it was a huge success.
I tried to comment yesterday, but my computer was acting weird.
I think your point system is a great idea! I can see how you're feeling as though you blamed him and then found out it was medical. But you're doing your job as a mom, and you deserve stars! So... don't worry about that.
The chart is great reinforcement. I've used them for various things with my own kids. It's a way he can monitor his own progress, too. It may take him longer to achieve the camera, but he will do it.
Laura, if you have a minute, will you take a look at this post on my journal blog and let me know what you think? I understand if you don't have time, but here it is.
http://forgetfulonesjournal.blogspot.com/2008/07/blocking.html
Thanks. Diana
See the second recipe on this post
http://wheelsonthebus.wordpress.com/2007/12/06/in-praise-of-spinach/
Good luck!!
The new system sounds great - you are such a wonderful mom!
Yea! Wow, glad to be of so much help (tee hee). Pat yourself on the back for this new chart-- brilliant.
Point systems really work for all of us, it is a nice easy way to see your progress and feel good about it. I am so sorry to hear about DJ's condition, but it sounds like he has a very good set of parents who are going to do everything they can to make things easy for him. Pat on the back for you.
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