Monday, January 17, 2011

Long Over Due Jaxson Update

I haven't posted an update since July...ugh and sorry!  I can say I've been busy and other such excuses, but bottom line I just haven't made time for this blog.  I have new adventures, but I'll save those for later.

Jaxson is 2 years old, but only 5 months from his third birthday.  He's up to so many new things - talking up a storm, trying to understand numbers, words, sounds, etc, helping mama in the kitchen, playing with his cars, trucks and animals and soo much more.  He's discovered TV...not my favorite hobby of his, but it was inevitable.  He's really into batman and superman.  In my book, this makes perfect sense since he's a CDH super hero.   See his favorite toy below...batman complete with bad guys and batmobile!

We did not have any medical issues or complications due to CDH in 2010,,,blessing!  But, CDH is never far from our thoughts.  I've been off the CDH radar lately, but I do try to keep on top of new CDH families that need our support.  There is currently a family here in Pittsburgh going through a CDH journey.  They have a blog that I encourage you to visit and offer words of support if you can.  Visit there blog at

As for those other adventures I mentioned at the top of this post...I am officially a full time entrepreneur! As of January 1, my role is as CEO of Infiniti Solutions, LLC.  Please feel free to check out our rough website at  Infiniti Events, LLC is the event division of the company and it has been around since 2004.  Behind the Scenes is the blog for Infiniti Events, so please check that out too!

I wish you all a happy and healthy 2011!


  1. This is so wonderful to read. I actually had a little boy who had CDH. He only lived 2 1/2 months. I kept a journal through the whole experience and plan on publishing it next year. Your blog is amazing, wonderful and heartfelt. Thank you for sharing this with people like me who need to read such inspiring and helpful things.
    I'm following.

  2. Thanks Elisabeth for your kind words. I think your plan to post your journal is courageous and my guess is that it will help many other families going through a similar situation.

  3. I am so happy that I had the chance to meet Jaxson and his mom. I can't say enough about how wonderful it was that you took the time to come and visit with Lisa and Ramsey when he was born. Your visit gave us such hope. I want to wish Jaxson a very Happy 3rd Birthday, and I pray Jaxson's Jox will be a huge success. Bless you Jaxson and family.
    Ramsey's Gram


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!