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Mon Aug 20, 2012, 12:02 AM

You Heard It Here First & DU Love Letter

This discussion thread was locked as off-topic by Grateful for Hope (a host of the General Discussion forum).

Later this week I will be putting out a press release on behalf of the Preemie Growth Project announcing eight DOCUMENTED children (plus the initial two) experiencing unprecedented "dramatic improvement" in neuromuscular issues; specifically, cerebral palsy, hypotonia, hyperspasticity and dystonia.

It feels like a miracle, especially to the families involved. We have dystonic children gaining weight, a hypotonic child climbing monkey bars, and measurable decreases in hyperspasticity. Friday I watched video of a child using "eye gaze" equipment while holding up his own head with 45 cells comfortably, which gave him the ability to vocalize his thoughts and have a real conversation with someone else; Saturday a mother wrote me about her son being able to use crayons for the first time in his life, and today another mother shared how it felt to watch her son RUNNING DOWN A HILL.

Two months ago, after spending a year in speech therapy, the dystonic child could barely use 15 cells, and had to have towels prop up his head; the crayon wielding boy couldn't even think about holding his own fork, let alone a crayon, due to the painful hyperspasticity in his hands, and my running boy had to be assisted walking up and down a single flight of stairs.

To those of us who have been blessed with healthy children, these accomplishments may sound ridiculously simple, but the changes for these children in less than two months have been profound. We are also getting reports of cognitive, communication and sensory processing improvements. More importantly, the patterns are identifiably identical to those experienced by the premature babies (including my own) and appear to be repeating in the other children we are tracking. I can only pray that the rest of the children in our project - twenty-two as of today, with nine of them joining this last week - continue the same pattern of improvement the others are seeing.

I have hopes that continued investigation into this area will result in a new understanding of previously incurable conditions, and even if it can only benefit children under age twelve right now, that there may be hope for the adults in the future as well.

This journey has been documented here on DU since 2007 with the birth of my own premature twins, and the "neighbor girl" threads beginning in June, 2012. I can confidently state that without the assistance of several members here, especially my favorite "google warrior" foo_bar, I do not think this would have been possible. Skinner, EarlG and Elad - THANK YOU for creating this amazing site where I could count on support and information when I needed it!!!

Yes, appropriate medical establishment folks have been notified, and behind the scenes all kinds of stuff is going on - the amount of work required to make "this" happen in such a short time has been crazy making! - and it isn't going to slow down for a while as the word is starting to spread; all of the initial parents in our project have begun letting their support people know the cause of the changes, and various groups have begun telling each other, which means more work ---

Sorry! Not meaning to complain, but I am wearing multiple hats at the moment, and every now and then it gets a little overwhelming! Before I crawl into bed to create 'to-do' lists in my sleep - the bi-weekly parent report updates to the web page aren't done yet! three people have to be 'reminded' their updates have to be emailed, and can't just be phoned in! intake for the new child submitted today! brain trust discussion on cognitive improvements! follow-up on foundation report! finish the dratted press release! - I need to take this minute and just remember to be grateful.

What is going on is amazing. I am privileged to be involved in it. It is bigger than I am, and I am in awe on a daily basis at what I am seeing/hearing/learning.

And these children who are getting better against all odds? I am a part of their story, even if they never know my name.

And DU, you are a part of it, too.

THANK YOU!!!

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Replies to this discussion thread
Arrow 6 replies Author Time Post
Reply You Heard It Here First & DU Love Letter (Original post)
IdaBriggs Aug 2012 OP
ChazII Aug 2012 #1
IdaBriggs Aug 2012 #2
progressoid Aug 2012 #3
IdaBriggs Aug 2012 #4
nolabear Aug 2012 #5
xxqqqzme Aug 2012 #6

Response to IdaBriggs (Original post)

Mon Aug 20, 2012, 12:12 AM

1. Thank you for sharing

your story. Anytime there is a medical break through it is cause to celebrate. Is it okay it I do a little happy dance?

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Response to ChazII (Reply #1)

Mon Aug 20, 2012, 12:20 AM

2. I will do it with you!

Although I will confess to crying earlier today with my "running boy" report. His mother sent pictures of him climbing a bouncy water slide, and giggling as he went flying down. Two months ago his core strength was such that he couldn't stand up in one!

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Response to IdaBriggs (Original post)

Mon Aug 20, 2012, 12:37 AM

3. Wow!

This sounds wonderful!

So happy for you and your family.

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Response to progressoid (Reply #3)

Mon Aug 20, 2012, 12:49 AM

4. To clarify, these are not MY children...

Except in the sense of them being a part of the project.

I apologize for the confusion; I am tired/should be sleeping!

I am blessed to have healthy five year old twins, and the "before" videos of the children in the project reinforced my gratitude for how lucky we have been!

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Response to IdaBriggs (Original post)

Mon Aug 20, 2012, 01:11 AM

5. I am so happy for you all!

How wonderful. I don't understand what it is the project is actually comprised of, but the results certainly seem astounding. Things like this just make my day, week, month, year!

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Response to IdaBriggs (Original post)

Mon Aug 20, 2012, 01:29 AM

6. Looking forward to the

press release. Trust you will share a lnk. Sounds like a dam of promising information is about to burst. Very exciting.

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