An Anchor for the Soul: Jim Beau's Story of Hope & CDH: Update on Jim Beau

Jim Beau is doing great! I can't believe he will be three on November 30!!! We just returned from a weekend trip to Williamsburg. We went to Busch Gardens and the kids had a blast. Jim Beau keeps saying he wants to go back to "Birmingham." We think he is somehow combining "Williamsburg" and "Busch Gardens" to come up with "Birmingham." It is too funny! We have things to work on...mainly getting rid of the pacifier...but other than that, he is growing up to be a really fun little boy. He loves cars and going to his school two days a week. He hasn't gained any weight....he is still around 26.5 pounds, which is the 10th percentile. But he has grown taller and is in the 50th percentile for height.

The last time we saw his pediatrician, she suggested that we see a gastroenterologist. Jim Beau has been on reflux medication his whole life. All CDH babies usually deal with reflux. They aren't really sure why, but for some babies it is a big enough issue that they have to have surgery. Jim Beau is on Zantac twice a day, which seems to control any reflux he might have, but our doctor wanted to make sure there was not any damage to his esophagus and we wanted to confirm that he actually has reflux. I would hate to be medicating him if he didn't need it.

We finally got in to see the GI doctor last week. She suggested that we do a 24-hour PH test to determine Jim Beau's level of reflux. So, on November 6 (don't forget to vote!), we will go in the morning to the hospital here in Fairfax. They put him to sleep and will put a tube up his nose and down into his esophagus. It will be attached to a little box on the outside. They are also going to scope him while they are in there to look for any reflux damage. He will wake up with the tube in his nose and hopefully he will be a good boy and just deal with it! He has to have it in for 24 hours and we record what he eats and stuff in a notebook. Then when they remove it the next day, they compare all the data and come to some conclusions.

The other issue is that Dr. Duffy thought Jim Beau's liver seemed enlarged. There are conflicting opinions about whether she said "large" or "hard." I think she said "large." Paul thinks she said "hard." Either way, we are going tomorrow to have an abdominal ultrasound. It is scheduled for 9:30 a.m. and poor kid can't have anything to eat or drink for four hours before!! Please pray for us! :) I'm not really sure what this could be about. I'm hoping his liver just feels funny because his organs weren't in the right place when he was born, etc. Please pray that it is nothing serious!

I am sorry I have not updated in such a long time. I will try to do a better job. (I know I always say that!). Please pray for CDH baby, Mateo who was born this morning in California. He is in the good hands of the doctors at UCSF, but aside from CDH has several other complications. We met his family when we were in San Francisco this summer for the CDH conference. Even while struggling with the diagnosis of their unborn child, they embraced the CDH community and even designed some new CDH awareness gear that might appeal to some of the older CDH survivors! You can see it
on CAFEPRESS.

As always, there are many other CDH babies and families out there. Please keep them in your prayers, including Abby from Birmingham who is going to the University of Florida to have her baby under the care of Dr. Kays.

I'll leave you with a few recent pictures!

First day of Preschool for Jim Beau