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Related: Culture Forums, Support ForumsI am trying not to cry.
I am sitting in the library and literally trying not to cry.
Finally at the point where the data is being put into charts.
I have "solid" data on 134 children.
Gender Impr % Impr Not % Not
Boy 72 63 87.5% 9 12.5%
Girl 62 48 77.4% 14 22.6%
Total 134 111 82.8% 23 17.2%
Preemie or LBW
Gender Impr % Impr Not % Not
Boy 49 45 91.8% 4 8.2%
Girl 45 40 88.9% 5 11.1%
Total 94 85 90.4% 9 9.6%
Non-Preemie/Not LBW/Unknown
Gender Impr % Impr Not % Not
Boy 23 18 78.3% 5 21.7%
Girl 17 8 47.1% 9 52.9%
Total 40 26 65.0% 14 35.0%
The data is looking AWESOME for the preemies, especially the boys.
So why do I want to throw up and cry and scream all at the same time?
I think I just made my point -- why do I feel so bad?
Drat - its a chart - anyone trying to figure it out is going to have to translate it. Sorry.
vanlassie
(5,683 posts)And it's YOUR tenacity bringing it forward!
IdaBriggs
(10,559 posts)It feels significant, but so upsetting for the rest of the families!
I haven't done the breakdown by age, but I think (no formal numbers yet) that once these deficiencies become "long term" issues, they aren't as easily correctable.
My "gut" says the maternal history factor is super important, but I don't have enough data collected on that to prove significant causation versus correlation, if you know what I mean.
I also have that damn Miralax screwing with things -- several of the children who saw "initial" improvement had to be marked down because they regressed (and their moms noted they were still using Miralax).
Pooping is important, but if it puts your kid in a wheelchair (and you don't know it is happening)....
I am getting a little punchy, I think.
vanlassie
(5,683 posts)to get it completed. Ultimately allowing your work to make a difference. Stay focused!
IdaBriggs
(10,559 posts)Hitting myself with the "should have pushed harder, faster, sooner" -- just want to throw up....
IdaBriggs
(10,559 posts)I will probably freak out and go ballistic all over the place.
Anger is better than pain. Anger is so much safer than this kind of guilty pain.
vanlassie
(5,683 posts)see what you see. It seems to be your purpose, yes? And you are doing the best you can do, in spite of the lack of credentials.
IdaBriggs
(10,559 posts)When I saw the numbers, I just kind of lost it. I spoke to a mom on Friday (a child who passed away from complications non-related to the project, who saw some improvement, but just not enough to save him) and I had this moment where I realized "that could have been MINE" and then thinking about those who don't know about this yet....
It just hit me hard. 90% of the preemies responding.
But only 65% of our participants were preemies....
I'm doing better today. Back at the library (this time sitting in the kids section so I can keep an eye on mine while they wait their turn to "read to a dog" while giving their daddy an hour or so to himself - ) and wanting to get it finished.
I need to return to work tomorrow. (This is a volunteer task and IT is where I make a living.)
I look back, and I see where it seems I was always meant to do this, based on the gifts and challenges I have been given. It is a spiritual thing, and part of me feels like I have failed at a deep level, because I should have finished it a while ago, but I was "busy" and "very involved in other things." I am trying to be proud of what I've done, but I still feel a deep shame for not doing more, sooner, better.
But then I try to tell myself that it will work out the way it needs to - that this has given things time to prove out - the information has been put out there, etc. And I will forgive myself in time.
90% just hit me hard....
Odin2005
(53,521 posts)9 weeks early! I was one of those kids whose names were on the Child Miracle Network displays in stores. My dad always mentions that my hand was the size of his thumb!
IdaBriggs
(10,559 posts)My babies were preemies, too. That is why I ended up learning about this...they were adorable little mutants!
KMOD
(7,906 posts)Hang in there, Ida.
IdaBriggs
(10,559 posts)One of each, and scary smart gifted. Also beautiful and healthy and kind.
I am a very lucky woman.
My boy/girl twins are adults now.
Enjoy them, (I know you will), they grow up so fast.
When mine were little, I used to have strangers ask me if they were if they were identical or fraternal, (after they were informed one was a boy, and one was a girl). It took all I had to not laugh out loud. I'd just smile and say fraternal.
IdaBriggs
(10,559 posts)Congratulations on yours!
I've been asked that question, too, and always try to be polite. One very nice woman asked me "how do you know they are fraternal?" I leaned over and whispered VERY LOUDLY "they have different bottom parts!"
arthritisR_US
(7,292 posts)the numbers you have posted or their significance
IdaBriggs
(10,559 posts)The "short" version is that I gave birth to preemie twins seven years ago, who looked like normal full term babies at four months old despite being two months early. I knew what I did differently, but kept getting told it was "luck" despite the fact it turned out to be in a textbook because I fixed the deficiency orally, like the vets do, instead of only via IV in the NICU.
So I started a non-profit, and a bunch more babies had the same thing happen, but we didn't document worth crap (kept expecting professionnals to take over - doh!), then a "floppy baby" who was supposed to end up a quadraplegic in a wheelchair because of cerebral palsy spontaneously recovered In Ten Weeks.
Still couldn't get anyone to pay attention - obviously "misdiagnosed".
Then the 9-year old neighbor girl NOT in the Project got out of her wheelchair, was able to use her hands, started to be able to remember the alphabet and stopped being chronic failure to thrive, and all heck broke loose.
I recruited 271 children and have solid data on 134 children who have diagnosed Neuro issues, including cerebral palsy and sensory processing issues.
Out of the 134, a total of 111 (82.8%) saw improvement in a minimum of four categories (bowels, appetite, growth, tone/strength, cognitive, communication, energy or sensory). That is 4 out of 5 children and the changes were bluntly significant. 23 children saw no real benefit and these break my heart.
Gender Impr % Impr Not % Not
Boy 72 63 87.5% 9 12.5%
Girl 62 48 77.4% 14 22.6%
Total 134 111 82.8% 23 17.2%
Only 65% of my participants were preemie or low birth weight babies - they saw 90% improvement rates.
Preemie or LBW
Gender Impr % Impr Not % Not
Boy 49 45 91.8% 4 8.2%
Girl 45 40 88.9% 5 11.1%
Total 94 85 90.4% 9 9.6%
My non-preemie kids (traumatic birth, no known associated cause, etc.) only saw an overall 65% improvement rate, with the boys seeing 78% and the girls only 47%.
Non-Preemie/Not LBW/Unknown
Gender Impr % Impr Not % Not
Boy 23 18 78.3% 5 21.7%
Girl 17 8 47.1% 9 52.9%
Total 40 26 65.0% 14 35.0%
It appears that correcting the deficieny issues orally in the identified high risk population (preemies/low birth weight babies) will PREVENT CEREBRAL PALSY and BONUS lower infant mortality/morbidity rates.
And I lost it Saturday because when I first asked for this to be investigated in 2008 and then begged again in 2009 and subsequently since, some of them hadn't been born yet.
Or died. And I realized my kids could have been "super special needs" instead of gymnastic/karate/swim kids with super smart brains/mouths and I felt like a failure for letting everyone down/not pushing harder to MAKE THEM investigate....
And there is a good chance this paper, which I have been immersed in to the point of neglecting my own family ("Mommy, we miss you!" will STILL NOT get them to get off their asses because it is ONLY based on 134 children and....
And I freaked out. But I am doing better now. I think.
But my loving husband just voiced an obscenity when I told him I was taking one more day off work to finish the paper, so we will see.
arthritisR_US
(7,292 posts)orally? Is this in the vein of a Lorenzo's Oil?