Turning 3!

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!

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

Family photo shoot!  Thanks Charlotte

Fort Morgan, AL Beach Trip

CDH Bill

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 maryareinhardt@gmail.com and I will hook you up with a letter to sign and send.

CHERUBS CDH Awareness Parade in D.C.

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.

Shands and Disney - 2 year check up with Dr. Kays

Jim Beau had his 2 year check up with Dr. Kays on February 21.   We flew down to Orlando on the 20th and I drove to Gainesville with Jim Beau the next day.   We visited our favorite playground and Chick-fil-A before heading to our appointment.   In the waiting room we ran into another CDH friend, Pearson.  His appointment had been moved to the same day as Jim Beau's!  It was nice to see Pearson and his Mommy and Daddy.  

Jim Beau watching Cars, waiting on Dr. Kays

 Jim Beau was very shy at first for Dr. Kays.  There were two other doctors in the room that he did not know, so I think that is why he was shy.  I think he missed Dr. Dickey, who we loved!  Anyway, I tried to get him to say "Go Gators" but he wouldn't.   At the end of the appointment we were all talking and all of a sudden Jim Beau yelled "Go Gators!"   We all cheered and clapped, which embarrassed him!  :)   Of course, he warmed up to everyone at the end of the appointment.   Dr. Kays says he looks great.  The appointment ended with Dr. Kays having to chase Jim Beau down the hall, which just proved to everyone that he is a normal 2 year old!   We did a chest xray on our way our, which Dr. Kays said looked perfect.  

Jim Beau with Dr. Kays.  Love the gator shirt! :)

Disney World was great, as usual.  I don't think we will go back for a while.  Here is a video of Jim Beau discussing who we saw at Disney.

Here in Virginia we are looking forward to the Washington, DC Parade of Cherubs on April 19.  We have our CDH Awareness t-shirts ready!     Almost 200 people have signed up for the parade, which will go from the Lincoln Memorial to Capitol Hill.   It will be a great time to meet other CDH survivors and their families, as well as raising awareness for CDH and CHERUBS. 

Jim Beau on the move

A quick update on Jim Beau!    We went to the ENT last week and he said, "it looks like a bomb went off in his ears."  ha!   So, we are getting new tubes put in on February 17.  It is perfect timing for him to start feeling better because the next day we are going to Disney on Ice and then on the 20th we fly down to Orlando for the week.   He has his yearly appointment with Dr. Kays (yea!) and we will do Disney World. We haven't told the kids that we are going to Disney.  We've just told them that we're going to Gainesville. They will be excited!!

Jim Beau loves cars and trucks.  If you ask him, "What is your name?" he says, "cars."  He loves watching the Cars movie, which we do at doctor's appointments and while waiting for Sissy at dance class.  Second to cars and trucks is parks and slides.   Thankfully there are many many parks to choose from here!

We are still working on getting him to eat.   The other day he ate 3/4 of a corn dog and I was so excited because they have so much fat.   But, the next time he was offered one he didn't eat it.    We just continue to offer him different foods and hope that some catch on!   He actually eats many different foods, they just are not high in fat or protein.    He is still at only 24 pounds and we were hoping to add a few more before we see Dr. Kays in a few weeks!

Here are a few cell phone pictures from an afternoon at the park.    I added a few of Jane Ritchie, too.  She came in here as I was working on this and was very upset that there were no pictures of her!    It is hard to be the big sister.   We have a family blog, but I have not updated it since this summer.  I guess I better keep it up, too, so that Jane Ritchie does not feel left out!  :)

Two Years Old!

We celebrated Jim Beau's second year as a CDH survivor on November 30!   We had a fun birthday party at the house.  Jim Beau wasn't sure what was going on, but once we started singing and put the cake in front of him, he realized that the party was for him!

Once Jim Beau turned two, he TURNED TWO, if you know what I mean!  :)  He likes to scream about EVERYTHING!     He continues to have ear infections and it doesn't seem like his tubes are working correctly, so we will be going to the ENT soon to have that checked out.   

HAPPY BIRTHDAY, JIM BEAU!!!