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!!!

Update

I am sorry it has been so long since I have updated Jim Beau's blog!   Daddy was gone all summer and we moved to Washington, D.C. in October!   We are settled now and love being closer to family and friends.  This weekend we are celebrating Jim Beau's second birthday as a CDH survivor.   He is doing really well. He is still holding steady at 23 or 24 pounds and continues to be a picky eater.    We saw cardiology at Shands right before we moved and they are thrilled with how his heart is doing.   They say it looks great and we shouldn't need any intervention in the near future.  The doctor suggested we start Jim Beau on Pediasure twice a day since he does not eat very much.  So, we are doing that and thankfully, Jim Beau really likes it.

He continues to wake up in the middle of the night and occasionally throws up if he eats alot.  Our new pediatrician here thinks it might be reflux, so we started him on Zantac again last week and are hoping it will help.  Mommy is very tired of waking up every night! :)

We see Dr. Kays again in February and already have our Disney trip planned, too!

Jim Beau was a lobster for Halloween!   He had the best time and whenever he sees a red shirt or red jacket he says, "lobster!"

He is talking almost as much as his sister and says new words and phrases every day.  He loves talking to his grandparents on the phone!   He loves driving around Washington, D.C. and pointing out the planes, monuments, cars, trucks and buses!  

Will update soon with birthday pictures!

Go Gators!

Jim Beau comes from a family of Alabama and Auburn fans, but we think he will always have a love for UF since he was born there.    Here is a cute video I took when he was learning to say "Gator".

NICU Reunion

Back in August I took the kids down to Gainesville to the Shands NICU reunion.  Daddy was deployed and we didn't have anything else to do, so we made a fun trip out of it!   We saw several babies, parents and nurses that we remembered from our time there two years ago.  

Jim Beau and nurse Andrea!

 Jim Beau didn't like the Gator!

 Yes, we visited Build-A-Bear, too!  :)

Jim Beau in UF news

Jim Beau was featured in this article along with the Massey triplets.  All three were born with the same heart defect as Jim Beau, Tetralogy of Fallot.    My favorite part is the pictures!  Jane Ritchie refused to be in a group shot that day, so I'm pleased with the ones they chose to use.

Photo by Jesse S. Jones

CDH Conference

Back in June May May came down and we all went to the CDH Conference in Orlando sponsored by CHERUBS.   We had a great time and learned alot!  I highly recommend this conference to parents of children with CDH and even those who are expecting a baby with CDH.     We learned about a new technique for babies with severe CDH that is done in the womb.  You can read a story about it here,  or watch a video story.   We also learned about genetic research that is being done to try to determine the cause for CDH.  Alot of it was over our heads, but from the smiles on their faces you could tell how amazing their work is!     You can read here about the research.