For today’s FX Memory we’re going wayyyyy back to…

June 17 and 18, 2008.  Ha.  Read the posts, these are just about the worst days we’ve had since the diagnosis.  Our stress level is at the very highest.  We’re worried, angry and feeling isolated.  But there was an awesome moment in there, that’s what I’m going to share here.

We’ve been working very hard to potty train Monkey for the last few weeks.  He’s not a big fan.  As often as not, he will tell us “No” and/or sign “all done” when we mention trying to use the potty.  It’s not a lot of fun for any of us.  It’s not awful, just not great either.  Our results are pretty dismal, we get him to successfully pee in the potty 1 or 2 times a day at most.  He’s still not telling us when he has to pee, he’s not telling us when his diaper is dirty (pee or BM), his BMs are still loose (despite Benefiber)…ugh.  There’s just not much encouraging us but we keep plugging along.

Yesterday morning Monkey came to my side of the bed and touched me to wake me up.  As soon as I opened my eyes he pointed at his bum and said “Yuck” and then pointed at the front of his diaper and said “Yuck” again.  Sure enough, he had pee’d and had a BM!  WOO HOO!  That’s the very first time he’s shown that awareness and/or communicated it to us.   The best part?  It was 7:30 and I’d overslept so Duhdee had to change the diaper while I showered for work.  Really, it can’t get any better than that 😉

7 thoughts on “For today’s FX Memory we’re going wayyyyy back to…

  • June 19, 2008 at 8:54 am
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    Evan’s BMs are still really loose, too. I always wonder if there is some connection to him being underweight. Is Monkey’s weight average?
    Sorry to hear about the school troubles. I can’t wait to start Evan’s meetings…LOL. After having worked in the special ed. room this past year, I’ve had quite an eyeful of the “inside.”

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  • June 19, 2008 at 9:32 am
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    Monkey is in the 90th percentile for height and 70th percentile for weight so I don’t think that is it for us, at least.

    I think we next need to consider that there could be dietary related reasons for his loose BMs which, honestly, I’m not really that excited about pursuing. I think we have to at least look at it because he does have firm stools more frequently with the Benefiber but it’s just no where near consistent (ha, ha! poop jokes! *sigh*)

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  • June 19, 2008 at 12:00 pm
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    Matty had the same issues too as a young kid. We have slowly weeded out certain foods that make him have the loose stools. He doesn’t eat bananas anymore. I figured out that one from my cousin with FX who is in his 30’s. Everytime he ate a banana he has major diarrhea.

    We also cut out anything with wheat or oats. So no whole wheat bread, oatmeal, nutrigrain bars, etc. His loose stools went down tremendously. We still left a bottle of immodium AD in the nurses office…just in case. This past school year he never had to take it once!!!

    And even after we stopped the issue with the loose stools he is still majorly underweight but he eats like it’s his last meal. As long as his weight progresses the doctor is not worried.

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  • June 19, 2008 at 3:19 pm
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    No bananas…I think Monkey will revolt. I can’t even imagine, lol. Ack.

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  • June 20, 2008 at 12:48 am
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    Way to go Monkey! I’m celebrating with you, mom! We have the same yuck BM’s with Ian as well. No one likes to change him. I actually woo-hoo out loud when he has anything resembling solid. We’re in the same boat with the bananas. We had to cut out cheese and most dairy a while back. He was a total cheese-aholic, but he got over it. I’m sure his is still dietary stuff, but to be honest, we haven’t pursued very much. We just continue to gross out.

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  • June 20, 2008 at 9:49 am
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    I had never thought that bananas could cause problems…Evan eats them almost everyday! I have wondered about oats, wheat, and milk, but I can’t be sure. When he first started eating solids, he had a few that were solid; maybe once or twice since then. It’s also common for him to go twice a day.

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  • June 20, 2008 at 4:06 pm
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    We mentioned this at the Fragile X clinic and Dr. Picker did say it seems reasonable to look at his diet for clues. He suggested keeping a food diary for a couple weeks to see if we can find a pattern. We’re already keeping a toileting diary so what’s one more spreadsheet?

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