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In a message dated 6/13/2007 9:35:55 A.M. Pacific Daylight Time, mcnairmichelle@... writes:

I had also thought of printing out a photo of one and putting together a flier that we could send to childrens hospitals for parents of other kids with gastro problems.Anyone into taking on some more advocacy and work for the Achalasia cause??

Aw shucks, , you made me blush. Thanks for the kudos.

If anyone is interested in the springboard idea, here is one to study. My husband is involved in Houston Transportation Professionals Club which raised funds to put a new playground together for Mc House here in Houston. They created a "Hawaiian Holiday' feast for the children and their families for a ribbon cutting ceremony to launch the playground, and passed out Dundy Dolls to each of the children, their brothers and sisters. The smiles were endless as were the happy tears. Not a dry eye to be found at the International Transportation meeting was held and a film clip of the event was shown.

Here is Dundy Doll: http://www.ccdundy.com/cc_story.html

I think you may find the story interesting.

The possibilities are endless to help advocate for Achalasia but it will take organization, the chance to grow and develop strength and capabilities over time. I am a strong believer that working together... we can make a difference... for ourselves (hope it's okay to include myself) ... and for the future. I think the Village is here :-) Though we are sadly, in a way, growing in numbers, we could muster strength enough to give back and help make the future much brighter, Encouraging and fostering strength & knowledge only makes us stronger as individuals, and as a group.

Make it a great day, everyone!

PegSee what's free at AOL.com.

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OMG! You and I think so alike sometimes. I too have been thinking

about Francesca alot. I was also thinking in terms of dolls for

children who are now in or will be in the hospital.

My grandmother crochets these little dolls for my girls, they're

probably about 16 inches long and she puts different color hair on

them and makes them clothes and whatnot.

I called my Grandmother yesterday and asked her to make a few for me

but explained that I wanted to somehow put removable " ng tubes " in

them. I'm thinking like using a small length of the tubing you use in

fish aquariums - the thought being that a 5 year old (or whatever

age) might like a friend who has the same thing she/he does.

She's going to pull out her pattern and get started while she figures

out the ng tube thing - I think I threw her for a loop on that one

(lol). I have another friend who does quite a bit of sewing and I'm

going to ask her to make little hospital gowns.

I figure once I have one, I'll take a photo and post it.

Any parents out there who might be interested in one?

Benito - if you will send me your address, I'll make sure that

Francesca gets the first one. It may take a couple of weeks to make

it, work out the ng tube issue and get it sent to you.

you can email me offline if you'd prefer

mcnairmichelle at aol.com

Anyone else have suggestions along that same line? Anyone else

crochet? My grandmother loves havinng projects but she isn't able to

keep up as much as she used to.

I had also thought of printing out a photo of one and putting

together a flier that we could send to childrens hospitals for

parents of other kids with gastro problems.

Anyone into taking on some more advocacy and work for the Achalasia

cause??

Happy Swallowing!

- in NC

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  • 8 months later...

,

It is wonderful to hear that you are fully on the mend. I have

worried about you (though silently), consistently sending Zen and

prayers for a speedy recovery. Still am!

ROTFL about your having an -ectomy for your megaE. I tried to address

that topic on Eva's page. See:

http://www.caninemegaesophagus.org/Greenough_EvaDiva_OurStory.html

I also have started a section on the " What is it " page, trying to

draw the correlation between the two conditions (human vs. canine)

and while I have a start on that analogy, I haven't been able to get

back there to finish it off. Notan -- can you help? Anyone? The URL

for that page is:

http://www.caninemegaesophagus.org/What_is_MegaEsophagus.html (see

towards the bottom of the page)

In a nutshell to answer your Q , the first surgical

specialiast suggested that I consider E-ectomy for E (I have always

found it bemusing that I called her E for short and there were so

many other Es or near misses of Es in her life). I opted not to go

this direction because (1) it's been tried before but the dog has

died each time, though this specialist told me techniques had

advanced, etc. (2) She obviously had never done one before, and (3)

though I agreed that removing her E might be prudent, one of the

underlying factors that was equally important was the diaphragmatic

herniation -- without fixing that, her E or psuedo E would not have

proper support and we would have been back at square 1. This

particular surgeon did not seem to place high importance on the

diaphragmatic herniation, though possibly she did and just didn't

tell me. Second opinions seemed the best way to go. I asked Dr.

Hobson, surgeon at A & M if he was willing to do an E-ectomy on E and

he decided that it would be best to leave well enough alone -- we

could consider that on down the line and her body would already have

enough to recover from with what was to be done for the

diaphgragmatic plus the separate, hiatal herniation. We just never

revisited an E-ectomy for E. I was determined she would get well

based on my ability to manage the disorder and we met with, by all

standards, excellent success (she lived and gained weight, though

experiencing intermittent difficulties with regurges.)

Hugs to you ! I am so happy to be back in touch with you and

the group! I missed you guyz!

Peg

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p_mc4031 wrote:

> ... trying to

> draw the correlation between the two conditions (human vs. canine)...

>

The canine conditions have not been my focus so you probably know better

than I do, but as I understand it, the canine condition does not respond

like human primary achalasia in response to methacholine chloride. This

implies a fundamental neurological difference. While the canine

condition can be idiopathic it often seems to be genetic whereas the

human condition rarely seems to have a genetic bases though AAA syndrome

and a few other very rare version do. In a gross way the conditions seem

similar but they also have these and other differences.

What correlation do you wish to make and what message do wish to convey

with it? Just wondering how to respond to your request.

notan

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