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Gender: Female
Hometown: South East Michigan
Home country: United States
Member since: Tue Jul 27, 2004, 01:19 PM
Number of posts: 10,559

Journal Archives

You Heard It Here First & DU Love Letter

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.


Ramadan Day 15: "Its like Gold out here," said the homeless man...

when I gave him a bottle of water on my way to work this morning.

I think I've mentioned that "thirsty is the worst" for me, especially with the weather we've been having lately, so I've been carrying bottles of water with me for the homeless guys I see when I drive to work in the morning. A couple of them have staked out a place by the exit ramp of the freeway, and they seem to rotate who stands there every day. They even leave the "Homeless" sign in a piece of fencing so any of them can use it. They are polite and courteous, and one told me he only comes when he can't pick up "odd jobs" to cover things.

Today's guy had long, dirty stringy hair, and a scruffy "need a shave" look. I've seen him once or twice before, and he seems nice. I asked if his friend was with him today, and he said yes. Fortunately, I had brought two bottles this morning, and was able to give him both. He thanked me, and smiled when I apologized for not having more.

"Don't worry about it," he said. "Its like gold out here."

He really meant it when he said "it was like gold." The man I gave it to yesterday thanked me and told me he would use it to clean the cut on his (very dirty) hand.

Fasting is hard, and while its gotten easier (first week is always the worst!), the sleep deprivation thing (because I'm getting up early, and staying up a little late) gave me "fuzzy brain" yesterday afternoon. I was talking with my husband about it this morning; the homeless guys must be exhausted - having to stay "on alert" while being in uncomfortable places, with inadequate food or drink. Their problem solving resources must be very limited, especially the longer they are out there....

He said it was "like Gold."

We are not rich, but at the moment, I am feeling very humbled by how much I have, and I am grateful.

Halfway done at the end of the day...
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