Pulled Pork for a Cause

Vitale's and an update

If you don't feel like making dinner tomorrow night (Tuesday, May 2),  my school colleagues have a solution for you...head to Vitale's in Zeeland tomorrow night between 4:00-8:00! They have organized a fundraiser with Vitales...so grab a pizza or two! Just print off the attached flyer and turn it in with your order.

In the way of a quick update, our family has been to Ann Arbor 3 times in the past week, with one more trip coming this week. We are completely sick of being in the car (and Chris and I are really  getting sick of listening to Frozen and Moana soundtracks), but the appointments have quite been productive. 

Kai also had GI, endocrinology, and pulmonary appointments last week. We made a couple of med changes and are waiting for chest x-ray results. But, all in all--especially for Kai---the appointments went well.

As I mentioned before, Sam's initial genetic testing showed abnormality in the form of a chromosome duplication. We met with the geneticist today and plan to move forward with doing full exome sequencing (reading all of his genes).  He also will have FISH testing completed; this will  help doctors locate the placement of his extra chromosome. At this point we know he has an extra 8th chromosome, but we are not sure if it is in sequence or is hanging out in some random place. This test will tell us where it is located. I always feel so impatient while waiting for genetic testing results to come back!

Recently, I  met with oncologists at the Comprehensive Cancer Center. They had some additional concerns which led to further testing being completed there and I am now also scheduled for an MRI on Friday. Hopefully we will have good results to share soon!

Thank you for all of the support through all of this!