CDH Awareness 2013 (Sorry it's been so long!)

So sorry I have not updated in forever.  Once again, I feel like Facebook has taken the place of my blog!  I promise to try to do better!

The most exciting thing we have done recently is go to the Senate and lobby for CDH awareness and research.   What was extra special is that Dr. Kays flew up all the way from Florida to be with us and with the group from CHERUBS.   We were able to visit four Senate offices with Gan Gan and actually go to sit down with the Senators to discuss CDH.  Dr. Kays was great at impressing upon them the importance of the babies getting proper treatment, as well as letting them know that these babies CAN live with the proper treatment.  Jim Beau running around their offices was proof of how good the outcome can be!   None of the Senators had heard of CDH and all of them were interested in making sure the NIH increased funding for CDH research.  I'm sure it helped having a Senator with us in the meetings, but I was really impressed at how helpful they were.   Here are some pictures from the day.

 With Senator Cardin and Dr. Kays

 Walking the halls with Dr. Kays and Gan Gan.  Boy, did we walk!  None of the offices were close together.  I wasn't used to wearing heels and paid for it with blisters.  It was worth it, though!

 With Dr. Kays and Senator (also a doctor) Coburn

 Jim Beau relaxing in Senator Alexander's office!

 Chatting with Senator Alexander about all the cool stuff he had in his office.

 Everyone with Senator Alexander.  Jane Ritchie was such a good girl through all this!

 With Senator Harkin...the kids were over it by this point and May May took them away!

 Dr. Kays and Jane Ritchie playing "Senator"

After our lobbying we went to the CHERUBS reception at the Capital Visitors Center where we met up with Dawn Williamson, the founder of CHERUBS, and some other friends from around the country who also came to lobby and walk in the parade.

 Dr. Kays and Dawn Williamson -- two CDH heroes!

We had a nice dinner with Dr. Kays that night at the Monocle while the kids played at May May's with a babysitter.  It was a great day!  Dr. Kays flew out the next morning to go back to Gainesville.  They were having their own CDH Awareness parade and he did not want to miss that.  

The next day we again participated in the CDH Awareness Parade from the Lincoln Memorial to the Capitol.   Grandma Marty was able to join us this time, as well as Aunt Ruth, Uncle John and Hannah and Gracie.   It was fun!

Jim Beau seems to be doing great.  He is potty trained, but still won't poop on the potty.  So, I guess he's not really potty trained, but we are trying!!!  He has started to eat a lot more and hasn't seemed to have any reflux problems.  While Dr. Kays was here we discussed taking him off the Zantac and he said it was fine for us to take him off for a while and see what happens.  I think he has a better appetite while he is NOT on the medicine, so I will keep him off for a while.  

He loves to go to the park, play with cars, and go to school.  Next year he will go to school three days a week, which I know he will love.    He is also taking a ballet class, which is funny!  He is the only boy in the class and he loves it.  Dr. Kays says he needs to be playing football but I think we'll wait a few years or 10 before we let that happen!

 Jane Ritchie and Jim Beau on Easter

 At swim lessons with his cousin Gracie!

 playing trucks at the park

at dance class!

Thanks for keeping up with us!   We are doing great!