Hey friends!
I wanted to update you on several things:
1) lawyer has put together our bi-laws and NPO information, our Tax Id information, and INC info. We are just waiting for the process to get through. It will take a wee bit of time so be patient! This will help people feel more comfortable to donate. And US folks and donate upto April 15th for tax deduction!
2) Meeting on the 25th is confirmed. I'm still taking questions and concerns, things you would like to ask the medical community, things you would like to see done, etc for content for the site. The purpose of gastroschisis.org is to present information to parents and the community that is medically sound and approved. We want to take away the overwhelming scattering and plethora of information out there.
Also, with the developments that gastroschisis has made, it is no longer safe to counsel parents that the prognosis is 30-60 days in the NICU with a silo surgery. 60-80% of the babies can be in the hospital now for 60days to 4 months plus, have multiple surgeries and may return home with bells and whistles (ostomies, central lines, GI tubes and feeding aversions, etc.) We need to prepare our parents for this. They also need to make sure that discussion has been made with medical practitioners on trying to salvage as much intestine as possible for long term care and increase in survival. You probably are aware none of this is out there in one place for parents to have access too.
Mothers have expressed interest and need for pediatrician to be on board to supply information on feeding and alternative foods for babies (issues with formulas and breast milk) as well as developmental issues.
We have a lot to have the public gain access too. My hope is that eventually we gain enough info and credibility that hospitals and doctors can use the site to educate families. That's the credibility and comprehensive structure I'm after.
3) Support networks. We will need funding to help parents with NICU induced expenses (bills, medical and misc. while parents are out of work) Child care, and in the unfortunate case, funeral help. No parent should be forced to make long term arrangements that don't bring them any comfort. We will also need funding to help local chapters raise up all over the nation and globe. I want the support to be hands on and accessiable. There are up to 2-3 babies at UNC at one time going through treatment, so these parents are floating around the NICU and not even knowing that there's another person going through the same thing. Or that there are people out there that can lend an ear, support, a hand or a shoulder. I love that we have a global connection everywhere for parents to post stories, I think that's very wonderful and unites people. But I want to make it more human and provide parents with any type of support they may need therefore we need:
Volunteers for fundraising (medical research, support, general)
Volunteers to be parent-to-parent support
Volunteers to help establish medical links in each community
Volunteers to help educate and raise awareness
Volunteers to eventually help get a chapter of Averys Angels setup nationally and globally.
Spread the word. As soon as we get content and it's all been approved by the medical communities and the proper people it will be posted to gastroschisis.org and averysangels.org. We intend on updating and expanding daily. So don't think what we gather will be final!
Spread the word. One out of 5,000 babies in the US is affected by gastroschisis. My listserv should be longer and I want it to be. I want to reach out to parents from the 70s and 80s who lost their babies to provide them some support and hope that their angel has not been forgotten and great strides have been made to help in all angels honors and for all gastroschisis parent anywhere.
Don't forget our twitter @4gastroschisis, http://forums.averysangels.org/, our Facebook pages/causes Avery's Angels NPO and my blog angelaverysmommy.blogspot.com all ways to get information on what we're about, what we've done and what we're doing now!
Love to all, have a great weekend, contact me at any time! meghanhall07@gmail.com
Love and blessings
Meg
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