Wednesday, September 23, 2009

Calling all volunteers...

Hi all,
Most of you know that last year Jaxson's Jog benefited a relatively new CDH organization called Global CDH. I specifically picked this organization because their mission is to help support parents with the emotional and financial hardships of a NICU stay and the challenges of taking a CDH baby home. I recently began volunteering as Communications Advisor for the organization. I assist with general communications as well as the search marketing and social media efforts.

At my first staff meeting, an announcement was made that there are additional volunteer staff positions available, specifically in the areas of Finance, HR and project management. If you are interested in learning more about these opportunities please email me at sarah.mayer@globalcdh.org.

On a Jaxson note...I can hardly believe that he is 16 months already. He is doing so much now, so much so that I cannot keep up with tracking it all. He's walking, almost running, talking (he knows body parts, animals and their sounds, hot and cold, car, truck, choo choo train and names of family members) and growing well. He's back on the growth chart for his weight, which was obviously a concern. He was getting extra calories in his milk and added fats/calories in his diet. This strategy put him back on the chart. In general, he eats some things really well (bananas, strawberries, waffles, toast, pasta, sweet potatoes), but I'm working towards making sure his diet is more balanced.

We joined My Gym, which is a gym just for kids. He loves it and we love that he gets to interact with other kids his age. I was happy to find that they have hand sanitizer everywhere, so that put me a little at ease in terms of Jax getting sick from going there.

Health-wise Jaxson is doing great - we're loving our new pediatrician, as she's made sure that he's seeing the right specialists (like Gastro, Pulmonology, Children's Alliance, etc) and even though Jax doesn't have very many long term effects from CDH, she takes his medical history into consideration when evaluating him. Something the other pediatrician wasn't doing.

Also there are several CDH babies in the NICU or on the way, so please keep them in your thoughts/prayers.
Posted by Sarah and Barry Mayer at 6:49 AM

2 comments:

  1. Kathryn OlmsteadSeptember 23, 2009 at 4:56 PM

    Global CDH prolly isn't any where near where I live.. I would love to volunteer but probably wouldn't be able to do to my baby sitting schedule. Maybe when K can go to a day care- if there ever is a day!

    On the other note, Jax looks great.. sounds like he is doing fabulous too!! Must be so exciting to watch him run around and listening to him talk.. I can't wait for K to do that!! :)

    ReplyDelete
  2. Sarah and Barry MayerSeptember 26, 2009 at 9:50 AM

    Hi Kate,

    Thanks for your interest in Global CDH! The organization is headquartered in New Jersey, but staff volunteers are located throughout the country. I'm in Pittsburgh, PA for example.

    If your still interested in the future just let me know!

    ReplyDelete

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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!