Jim Beau will be 4 on Saturday, Nov. 30! Can't believe it. I told him since he is finally pooping on the potty he is "allowed" to be 4! :) We had a party last week with his boy classmates and girl cousins. He wanted McDonald's so that is what we did. The kids had an awesome time on the playground. I must say that the poor birthday cake they provided was not as good as the ones we had back in the 70s and 80s. I probably should have made my own cake, but the kids didn't notice! Here are a few pics!
In other news, Dr. Kays recently published his work on CDH babies. You can read all about it here:
We haven't been doing much this summer, but the kids have loved the pool. Jim Beau will now wear his puddle jumper floatie and loves swimming in the big pool all by himself. He actually swam in his first swim meet (kickboard) a few weeks ago. He had an older girl helper in the lane with him, but we didn't realize that he was going to have to jump in at the start. The other kids were halfway down the pool before Jim Beau had the courage to jump in! The video isn't great but you can sort of tell when he jumps in because the crowd gives a cheer. By the end of the race he was loving it and loving all of us cheering for him.
Sister, Jane Ritchie, is doing awesome at swim. She got first place in freestyle over the weekend and continues to improve. Must add a video of her on here, too! This is backstroke from a few weeks ago. She finished second (only to a boy!). Excuse momma cheering too loudly in the video! That's her with the pink goggles.
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!
Jim Beau is now 3!! Yea! He had a great, wild birthday party at Chuck E. Cheese with some family and friends.
Raccoon hat from Aunt B and Uncle Eddie
Dump Truck cake!
He got his very own Leapster Explorer so that he doesn't have to fight Sissy for hers and a cool Lightening McQueen car and so much more. Thanks to everyone who helped us celebrate!
On a medical note, the PH Study we had done came back normal. Jim Beau did such a great job during the 24 hours he had to wear the thing. They did a GI scope and everything looked wonderful with no damage from reflux. Below is a picture. He had a tube coming out his nose that was attached to a box he had to wear like a purse. They gave us "no no" arm bands that he was supposed to wear. The arm bands looked like big casts and he couldn't move his arms! It was pitiful so we took them off and just watched him carefully. We didn't want him pulling the tube out and ruining the test. He did great and it was worth it to get results that were normal.
We also had an ultrasound of his liver because Dr. Duffy thought his liver seemed large. The results were that his liver is large...in the 95th percentile, but everything else about the liver looked good. Cardiology check up this week went well, too. Everything is stable so we just keep doing what we're doing and have check ups every 6 months.
We hope everyone had a great Thanksgiving! We are looking forward to Christmas!
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.
We are so happy that Gan Gan introduced a CDH Research Bill on the floor of the Senate. You can watch it HERE. We think he did a good job, if only he could pronounce "diaphragmatic" correctly! :)
The Bill creates a national campaign to increase awareness of CDH and requests that NIH evaluate funding for CDH research to determine whether it is adequate or not. (We think it is not!) You can learn more about the Bill HERE.
The best way to support the legislation is to write to your Senators. If you would like to write a letter, please email me at email@example.com and I will hook you up with a letter to sign and send.
On April 19, we participated in a CDH Awareness parade in D.C. We started out at the Lincoln Memorial and ended at the Capitol. Gan Gan met us there and spoke to all the families. It was great fun! I only wish we had more time to meet all the families and hear their stories. Jim Beau and Jane Ritchie were troopers during the walk. Of course, they were riding in the stroller and wagon! :)
CHERUBS is a wonderful organization. Learn more at www.cdhsupport.org and www.savethecherubs.org.
Our son Jim Beau was born with a birth defect called Congenital Diaphragmatic Hernia (CDH), in which the diaphragm fails to fully form, allowing abdominal organs to migrate to the chest. Although 50% of the babies born with CDH do not survive, we found HOPE for Jim Beau at Shands Hospital in Gainesville, FL, with a surgeon named Dr. David Kays. Their survival rate for CDH babies is unprecedented.
Jim Beau was also born with a congenital heart defect called Tetralogy of Fallot. He had open heart surgery on March 9, 2010, also at Shands.
Read how we were diagnosed here. And read Jim Beau's story from the beginning here.
If you have any questions, please email me at firstname.lastname@example.org