So, I've been brewing this idea for some time and have finally started taking action to make it a reality. First let me be clear...I have no experience shooting a documentary! I hope to line up advisors, volunteers and folks with experience to help me make it a success.
I have immersed myself in many blogs, carepages, facebook pages, etc of other CDH families and their stories since we received our diagnosis. I feel connected to them as if I knew them personally although I've only met a few of them. Day in and day out I read their updates and cheer when something great happens, pray when something not so great happens and cry more often than not at what I can only describe as the most touching posts I've ever read.
I decided after Jaxson's Jog that I needed to continue to spread the word about CDH so that this birth defect and this amazing CDH community can be known to many instead of a few. I participated in Letters for CDH on July 15 and again I felt proud to be a part of such an amazing community. Praying for families daily and commenting on others' blogs is I suppose another way. But, the documentary is my next project.
I'm certainly afraid that I won't get this documentary right and I'm afraid it won't accomplish my goal of making CDH as well known as Cystic Fibrosis and Spina Bifida. However, I have to believe that it is possible. I hope to present information about the defect along with as many CDH stories and journeys as possible.
If you're a CDH family reading this post I need your help to make sure this documentary is great. If you would like to participate, please email me at sarahjmayer23@yahoo.com.
Also, I have started a Fundable page for donations toward the production costs. If you're interested in giving you can check it out at: http://www.fundable.com/groupactions/groupaction.2009-07-29.1606099984
Thank you!
Thursday, July 30, 2009
Tuesday, July 14, 2009
Important post
It's been a while since my last post, but some important things are happening in the CDH community. First and foremost, there is a CDH family that needs your support and prayers as they are going through an extremely difficult time. Their daughter Avery has fought tooth and nail to beat CDH, but they have decided to take her off of all support and spend as many precious moments as possible with her. I know that many prayers and thoughts are already being sent their way, but I ask that you add yours to the list. I have been touched by their journey as have many others and I am truly hoping for a miracle.
The second thing I want to mention is a campaign to spread the word about CDH to the media. The project is called Letters for CDH and you can find out more at www.lettersforcdh.blogspot.com. Please support this effort if you're not already doing so. It's a pure and unbiased effort to get the word out about CDH.
And what post would be complete without an update about Jaxson. We had a rocky week last week with our first hospital visit since being in the NICU. Jaxson came down with a stomach virus that presented itself in an unorthodox way - no fever and no diarrhea. Given his complicated history, we of course feared bowel obstruction or worse re-herniation. After two ER visits, a 3 day hospital stay at the brand new Children's Hospital of Pittsburgh, 3 failed IV sticks, one successful head IV, many fluid infusions, an x-ray, ultrasound, blood work and an upper GI...Jaxson was given a clean bill of health and the diagnosis of stomach virus. He's finally on the mend, eating better, gaining back the pound and a half that he lost, and back to his happy boy self. It was scary, but I feel like we as parents acted quickly, paid attention to his sickness cues and remained cool and calm so we could focus on getting Jax healthy again.
I'll end with another plea to pray for Avery and her family. CDH may be life threatening, heart breaking and merciless at times, but it produces some amazing fighters. I am praying for a miracle tonight.
The second thing I want to mention is a campaign to spread the word about CDH to the media. The project is called Letters for CDH and you can find out more at www.lettersforcdh.blogspot.com. Please support this effort if you're not already doing so. It's a pure and unbiased effort to get the word out about CDH.
And what post would be complete without an update about Jaxson. We had a rocky week last week with our first hospital visit since being in the NICU. Jaxson came down with a stomach virus that presented itself in an unorthodox way - no fever and no diarrhea. Given his complicated history, we of course feared bowel obstruction or worse re-herniation. After two ER visits, a 3 day hospital stay at the brand new Children's Hospital of Pittsburgh, 3 failed IV sticks, one successful head IV, many fluid infusions, an x-ray, ultrasound, blood work and an upper GI...Jaxson was given a clean bill of health and the diagnosis of stomach virus. He's finally on the mend, eating better, gaining back the pound and a half that he lost, and back to his happy boy self. It was scary, but I feel like we as parents acted quickly, paid attention to his sickness cues and remained cool and calm so we could focus on getting Jax healthy again.
I'll end with another plea to pray for Avery and her family. CDH may be life threatening, heart breaking and merciless at times, but it produces some amazing fighters. I am praying for a miracle tonight.
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