I can't believe that Jaxson's Jog is only days away - May 23 is the big day! I'm so anxious for the big day to arrive. I am working on media attention this and next week and really hope that some local Pittsburgh stations and papers will pick up the story. It is so important to me that Jaxson's Jog spread the word about CDH.
I sent a news release this morning out through a free wire service called PRLog.org. Here's the link in case you're interested: http://www.prlog.org/10236499-jaxsons-jog-event-spreads-word-about-congenital-diaphragmatic-hernia-in-pittsburgh-pa.pdf
I'm also excited that we will have several CDH families present at the race. It will be so great to have them be a part of the effort to spread the word.
On a Jaxson note, he will be one year old on Tuesday, May 19! It's hard to believe it's been a whole year, but what an amazing year it has been. We are so lucky to have Jaxson with us and in such great health. I cherish every moment with him and am extremely blessed and proud to be his mama.
This blog is a place for us (Jaxson's mom and dad) to share his CDH story. Our hope is that this blog will help other CDH families who just starting their journey.
Thursday, May 14, 2009
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Welcome Jaxson's CDH Journey
Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.
Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.
He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.
He is our CDH rock star!
Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.
He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.
He is our CDH rock star!
Oh I wish I could be there!. It's just too far away from me. But I am wishing you the best and I will be thinking of you all!
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