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.

A nugget of info that helped us...

When we were making the tough decision on where Jaxson would be born, a Canadian friend of ours sent us this study about how survival rates were more favorable at hospitals that saw a high volume of CDH cases. Here's the link to the study: http://www.jpedsurg.org/article/S0022-3468(04)00040-5/abstract.

Children's hospital here in Pittsburgh sees 12 CDH cases on average every year (as of 2008) and CHOP's number of CDH cases was around 45-50 when were were researching hospitals. CHOP's number may be different now, I don't know for sure. We had many reasons for choosing CHOP, but one was this info about high-volume vs low volume.

We asked all of the hospitals we researched: how many CDHers they treat a year, what is their survival rate, and what is their ECMO philosophy (this was a huge decision factor for us). Anyway, just wanted to share because I forgot about that particular study!

At home, resting

Everything with the surgery went well. The doctor was able to
pull the left testicle down from Jaxson's abdomen, so we don't have
to go back for a second surgery! Yeah!


Jaxson was a little trooper, woke up from the anesthia very well
(much better than I do) and so we were out there pretty quickly.
He's been resting and a little irritable, but mostly because he's
hungry. We can't feed in solids or milk for a little while
longer.


Thanks for the prayers!

In Surgery...

Hi All,

Today is Jaxson's orchidopexy (spelling?) surgery (for undescended testes). We arrived very early...6 am! Checking in went really fast and he was taken back to surgery around 7:45 am. One of his testes was difficult to find upon examination, so there is a slight chance they may have to bring down as much as possible and then tack it; then we would have to come back again for another surgery. We are praying that this is not the case though. It's been almost an hour, so we should be getting an update from the OR soon.

I'll post another update later on...

Thanks,
Sarah