Well … Yes, we’re back to the begginning. However, this time we understand it all a little better. The reason why we came back to square one was because somehow we let the ball drop on her bowel movements. She had not gone in six days! Yes that was six days! So of course the GD kicked up to an extreme.

But, Thank God, after two days of bowel movements (five in total) we seem to be back on track!!!! The GD had flared way way up and gotten to a level that brought us back to the begginning but once she moved ALL her bowel we had our little girl back WITHOUT any GD !!!!!!

Now we’re fine tuning all over again. GD has been present on and off for the past couple days but like I keep saying once the bowels are moved the GD dissappears until the next urge comes. She’s back on Miralax and we’re really monitoring her diet. Filling it with just the right amount of fiber and such in hopes of stopping the Miralax completely. The occupational therapist, case coordinator and nutrionist that have been working with us are all brain storming with my husband and I trying to figure out how we went from one extreme to the next so quickly.

The good news is that we’ve had some GD free days here since the last post and so there’s still hope that she’ll be able to continue on and enjoy her days uncontrolled by GD!!!

Posted: April 7th, 2008 under Good Days.
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YES – That’s right SIX full weeks without GD. Not one second here or there. Trust me I kept looking for it everywhere. Around every corner, every quite moment, I opened her door while napping / sleeping just to peek, NEVER did I see it. What a wonderful six week stretch it HAD been!! Every meal was eaten and every car ride was enjoyed. Shopping trips – OMG - stress free. Nobody looked at her diferently. Only the ones who are reading this site would be able to fully understand how wonderful these past weeks were.

THEN … My mother, daughter’s and I were heading out for a shopping day and at the very first stop – there it was. Only for a brief moment but none the less - there. We crossed our fingers and headed on our way – nothing for hours!!! Then towards the end of the day – BAM – there it was. Right back to sqaure one when it was out of control and controlling her every minute. I’m speechless !!!!!!!!!!!!

Though I know it must be hard for some to understand but for her this is DEFINITELY revolving around her bowels. NO – I’m not in some kind of denial. I fully accept this Dx and understand all that I’ve read. But nowhere in ANYTHING that I’ve read has anyone mentioned this condition to the severity that my daughter gets it.

NO !!!! Distraction doesn’t work and it sure as hell doesn’t look remotely close to enjoyable. Take tonight for example ( only because it’s the latest – though know that every second since it resurfaced GD has been present ) here was my daughter at her aunt’s house w/ her most favorite person in the world – her ‘cuz – with freshly baked chocolate chip cookies, motorized ride on toys, new toys / environment … well you get the pic and where was she you ask? … on the cold hardwood floor !!!!!!!! at our feet in the dining room for hours!!!!!!!!  Please what two year old in their right mind would ignore all that for none stop GD – for hours!!

Here’s how I know it’s connected to her bowels. NOBODY knows a child better than their primary care taker – NOBODY!!  I’m with her every second of every day. Let me tell you she has not had a descent bowel movement in DAYS. Yep that’s right the GD came back the second she became constipated. We’re right back to pumping her full of fiber and mirlax. After each BM no matter how small you can see the relief in her beautiful eyes and the GD stops until the next one when she’ll say “my poopies are coming”.  I’m telling you this is the connection FOR HER!!  When this fear ( she’ll scream bloody murder on the toliet while going)/ constipation builds up the GD is present with a vengenace. When the BM’s are all done GD is GONE !!!!

Presently … oh boy!!!! We’re right back to suare one. These past couple days have been horrible. NONE stop GD, no BM’s and one very unhappy little girl and a disheartened mommy. Not defeated just down. The therapists are just as in shock as I am. So, we’ve all gone back to the very beginning steps of her therapy. We had made such huge progress with the listening program and diet alone. Her bm’s were regular and the GD was gone… Just when we thought we had it under control.

Again, I know there is connection here. May not be true for all – quessing the one’s who find it easy to distract their child and find that GD doesn’t control  their tiny body. For me and surprisingly many others – we find GD controling and can’t stand to watch it torture our children.

I have taught her that her bedroom is the place to do it. It can’t be done in  front of others and she knows this. She has gotten very good at “hiding” to do GD. But ALWAYS she’ll have to move her bowels – the more severe the GD the closer the BM. So here I go round one all over again ….

Posted: April 1st, 2008 under Uncategorized.
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