I'm sorry I haven't posted in a minute. I've come through some medical fun-ness. I'm sure my doctors turned into vampires for 3 weeks there. O well! At least that's done! I'm feeling much better too!
So Avery's Angels is well on it's way! We have so many new faces who have reached out for help or to help and we are getting the site up soon (look for it in a few weeks!) and UNC Hospitals has created a whole team for our medical web needs. It's very promising.
If you have been referred to this site looking for support please email me at meghanhall@averysangels.org We have a library of support available to you and whatever you may need, medical answers, hospital referrals, support, or just to talk we can get you plugged in!
(I LOVE SAYING WE!!!)
If you are an existing group or related group I want to enlist your help and support. We're taking everything out there to the next level. And we want you and your members listed to broaden your efforts, help you and also have your help with what we have going on! Put it this way, if every gastroschisis site out there could umbrella there would be a family in each county in the US with gastroschisis experience who could help another family. Let's do this!!!
I will forewarn everyone that I'm thankful that I will no longer be the sole face and spokesperson for this endeavor. The websites will be up and you will see how many thousands of families out there all need Angels (that's us!) and how we're getting to them AND how our angels and babies (some of whom are grown!) helping everyone.
(And I can start journaling again!!)
Cycles of grief are tricky and I don't want anyone who is searching for answers to be dissuaded and overwhelmed by some of the content here. YOUR PROGNOSIS IS GOOD! Our Avery boy was a little anomaly but his carepath was not. That is my motivation, our motivation (I LOVE SAYING OUR TOO!!!) That we know how alone it feels and how little there is out there that you can get to for a real answer. There's a lot, scattered everywhere, but we're getting to answers in one place to inform you and give you some of that control and power back that I'm sure you're feeling got yanked right out of your hands. Your baby is going to be on an amazing adventure. And we're here to get you through it all.
LET US HELP! I know we sound like every other website out there for right now, but the good news is we have reached their admins and hopefully soon we'll be all together. And we can offer a DIRECT LINE OF COMMUNICATION WITH ONE OF THE MOST EXPERIENCED GASTROSCHISIS COMMUNITIES AND HEALTH FACILITIES IN THE NATION! (It will come from a doctor with a UNC email address so don't believe me? Just try! hehe)
Join us! Meet us! Let us meet you! Let us help you!
Love from so so many at Avery's Angels
Meg
Wednesday, February 24, 2010
Thursday, February 11, 2010
Forward momentum
This week we have recruited many new volunteers and the gears are turning. I'm learning how much I desperatly need a computer as my iPhone makes organizing all these folks and information increaslingly more and more difficult.
Several things-
We need more volunteers and more information. Please contact me with your name, information, talents to offer and interests to meghanhall@averysangels.org
We will be moving forward to get our websites up. I have a meeting this weekend with the webdesigner to organize and design our content. I will warn that our initial output will be a work in progress but I'm so confident that it will be a great foundation. We will be starting with our support site, averysangels.org while we allow time for the UNC Hospitals to collect the massive amounts of information for the medical site.
I'm still looking for carepath stories and belly button pictures. Please submit them too me (bear in mind we won't list names if people would rather not once they are posted.) Any medically relevant pictures or video we'd love to make accessible to our parents out there.
Let me hear from you! Contact me at meghanhall@averysangels.org any time with concerns, questions, support needs and suggestions. We are here to serve.
Psalms 91, we are here to be the angels to lift your body and spirit up so that your feet will not strike a stone. Let us help and build this organization in the way that will best benefit you.
Love and blessings
Meg
Several things-
We need more volunteers and more information. Please contact me with your name, information, talents to offer and interests to meghanhall@averysangels.org
We will be moving forward to get our websites up. I have a meeting this weekend with the webdesigner to organize and design our content. I will warn that our initial output will be a work in progress but I'm so confident that it will be a great foundation. We will be starting with our support site, averysangels.org while we allow time for the UNC Hospitals to collect the massive amounts of information for the medical site.
I'm still looking for carepath stories and belly button pictures. Please submit them too me (bear in mind we won't list names if people would rather not once they are posted.) Any medically relevant pictures or video we'd love to make accessible to our parents out there.
Let me hear from you! Contact me at meghanhall@averysangels.org any time with concerns, questions, support needs and suggestions. We are here to serve.
Psalms 91, we are here to be the angels to lift your body and spirit up so that your feet will not strike a stone. Let us help and build this organization in the way that will best benefit you.
Love and blessings
Meg
Wednesday, January 27, 2010
CONTENT
Please submit your list of medical content you would like to have avaliable. The UNC hospitals are compiling what we list.
Obviously, (or not) a gastroschisis baby does not have a pre-determined or set course of care. So all possible angles and procedures can not be listed in sequential order. But care paths, surgeries, infections, procedures and so on can.
They also suggested compiling medically specific and concise carepath stories from parents. Our Avery's Angels will list the emotional and story section of care paths and stories, these stories are to just show the different care paths that babies can have.
Another very amazing and wonderful suggestion is that parents take pictures of their gastroschisis baby/child's belly buttons. This gives a very precious picture of how variant care paths can be and what to expect.
Email your suggestions, care stories and pictures to me at meghanhall@averysangels.org
Obviously, (or not) a gastroschisis baby does not have a pre-determined or set course of care. So all possible angles and procedures can not be listed in sequential order. But care paths, surgeries, infections, procedures and so on can.
They also suggested compiling medically specific and concise carepath stories from parents. Our Avery's Angels will list the emotional and story section of care paths and stories, these stories are to just show the different care paths that babies can have.
Another very amazing and wonderful suggestion is that parents take pictures of their gastroschisis baby/child's belly buttons. This gives a very precious picture of how variant care paths can be and what to expect.
Email your suggestions, care stories and pictures to me at meghanhall@averysangels.org
Monday, January 25, 2010
Meeting today!
I'm heading out early from work to meet with the hospital staff at UNC.
I'm so excited to see them again. They're amazing and even though our journey with them wasn't always the most fun, I can say that they were very capable and I trust them with the life of all of my children!
We'll be collecting information for our websites and the group has been gathering thoughts on lay out and links and so forth. I'm so excited to start seeing what Chris and Herb put together!
It's never to late to submit your imput and suggestions and concerns! We'd love to hear from you!
meghanhall@averysangels.org
I'm so excited to see them again. They're amazing and even though our journey with them wasn't always the most fun, I can say that they were very capable and I trust them with the life of all of my children!
We'll be collecting information for our websites and the group has been gathering thoughts on lay out and links and so forth. I'm so excited to start seeing what Chris and Herb put together!
It's never to late to submit your imput and suggestions and concerns! We'd love to hear from you!
meghanhall@averysangels.org
Sunday, January 24, 2010
JOIN US!
Let's get linked! Please take the challenge to get people invited. We are on the eve of posting our website and we need volunteers and help! 1 out of every 5000 in the US means you know someone who has been affected! Get the word out there!
Twitter 4gastroschisis
Facebook Pages/Causes Avery's Angels NPO
Forums forums.averysangels.org
blog angelaverysmomy.blogspot.com
Twitter 4gastroschisis
Facebook Pages/Causes Avery's Angels NPO
Forums forums.averysangels.org
blog angelaverysmomy.blogspot.com
Wednesday, January 20, 2010
Getting Involved
Hey friends-
We will soon have up a more formalized list of specific "volunteer job descriptions" (thanks to June!! She's awesome!) posted and emailed out. In the mean time I want to hear from more folks! If you have specific talents and wishes, please email me what you'd like to be part of and we can work from there.
I do need-
People for awareness/education
People who want to be parent-to-parent support
State NPO fanatics ready to start once we get setup
Grant writers
Volunteer coordinators
Medical contacts per-state
The list could go on. I want to hear about your specialties. It? Volunteer? Previous NPO work? Volunteer? Secretary? Treasurer? CPA? Legal assistant? Medical? Mother? Grandma? Grandpa? Father? Nurse? Is there a skill you can plug in any way?
We hope to have a space up to do a formal "Roll Call" and we'll have more specifics posted but be thinking and reaching out meghanhall@averysangels.org
In the meantime, the meeting is closing in on us! It's NEXT Monday the 25th. So please please post your questions/comments and concerns at forums.averysangels.org
Shortly after the meeting the content will be organized and posted on our sites!! Can't wait to get us state/national/global!
We will soon have up a more formalized list of specific "volunteer job descriptions" (thanks to June!! She's awesome!) posted and emailed out. In the mean time I want to hear from more folks! If you have specific talents and wishes, please email me what you'd like to be part of and we can work from there.
I do need-
People for awareness/education
People who want to be parent-to-parent support
State NPO fanatics ready to start once we get setup
Grant writers
Volunteer coordinators
Medical contacts per-state
The list could go on. I want to hear about your specialties. It? Volunteer? Previous NPO work? Volunteer? Secretary? Treasurer? CPA? Legal assistant? Medical? Mother? Grandma? Grandpa? Father? Nurse? Is there a skill you can plug in any way?
We hope to have a space up to do a formal "Roll Call" and we'll have more specifics posted but be thinking and reaching out meghanhall@averysangels.org
In the meantime, the meeting is closing in on us! It's NEXT Monday the 25th. So please please post your questions/comments and concerns at forums.averysangels.org
Shortly after the meeting the content will be organized and posted on our sites!! Can't wait to get us state/national/global!
Friday, January 15, 2010
COME ON! LET'S GO!
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, our Facebook pages/causes Avery's Angels NPO, http://forums.averysangels.org/, 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
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, our Facebook pages/causes Avery's Angels NPO, http://forums.averysangels.org/, 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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