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.

Voting on Facebook!

Please take a few seconds to vote for CHERUBS in this Facebook contest.  They are a great organization that helps raise awareness for CDH.

Crazy walk

Here is a video of Jim Beau's crazy walk!   It's a little hard to concentrate when Sissy is jabbering on and on about something or other.   :)

Lucky

It is taking me forever to get a new post written for this blog!  I think because I started writing something really long and can't seem to finish it.  So, I decided to start over!

On April 7 we had to take a little emergency trip down to Gainesville to see Dr. Kays.  Jim Beau had been throwing up for a couple of days.   He was VERY lethargic.  All he wanted to do was sleep or sit.   When Dr. Kays heard that he was throwing up bile, he told us we needed to come see him.  When Jim Beau had the surgery to repair his diaphragm his stomach was not in the correct position.  So, they had to rotate it and do a surgical procedure on it to keep it in place.  Sometimes this causes scar tissue, which can lead to an obstruction, which can cause major problems.

We arrived at the emergency room at Shands at 10 a.m.  The emergency room is in the new part of the hospital and is really nice.  They did a stomach x-ray and started Jim Beau on i.v. fluids.  We had visited our ER twice and they said he wasn't dehydrated.  But, he sure did feel better once he had the i.v. fluids!   Dr. Kays said the x-ray looked good and that it was not an obstruction.  They admitted us to the hospital just to make sure that he did not continue to throw up.

Jim Beau definitely knows the meaning of the word "no".  He did not like anyone touching him and would say "no"very forcefully.   It was pretty funny.  At this point we knew he was feeling much better because he was hungry. He was eating and drinking everything in sight at the hospital.     He was still very weak.  As you can see from the picture below, he would put his head down to eat!

Finally around 8:30 p.m., Dr. Kays came back to see us and said we could go.  We were very excited not to have to spend the night in the hospital.  Jim Beau did not like being cooped up in a hospital room. There at the end we had to take turns walking him around the hospital floor in the stroller to make him happy!

We continue to be reminded how lucky we are that Jim Beau has such a great doctor.  Dr. Kays said that when he got our message he wasn't sure if we were at our hospital or not and was trying to figure out how to send the helicopter to get Jim Beau!   It made us feel really good to know that Dr. Kays would actually send the helicopter to get Jim Beau.    I remember back when Jim Beau was born, I asked Dr. Kays how I would know that something was wrong.  He said, "When he is throwing up bile and your emergency room says it is just a stomach virus, you know to come see me!"     This experience was a reminder that even though he looks perfectly normal, Jim Beau is not a normal baby and sometimes needs a little more attention.   Thank goodness he has such a caring doctor.

Although the day was tiring and scary for Mom and Dad, I think it was the best day of Jane Ritchie's life!  :)   She got to go home from school with her teacher, Mrs. Ingrid.  Then Mrs. Erin picked her up and took her to Chick Fil A for dinner.  She keeps asking me when I am going to take Jim Beau to Gainesville again so she can go to Mrs. Ingrid's house!

 In other news, Jim Beau went from having a stomach virus, to having a runny nose, fever, cough thing. I'm taking him to the doctor again this morning just to make sure he is ok.  Hopefully soon he will be back to his old self.   He has started taking 6 or 7 steps on his own, but is not fully walking yet.   Last night he was actually standing on his own and taking some steps.   We went to Mobile for Spring Break and on our way back he walked alot at the Chick Fil A in Tallahassee.  I think it must have been the floor that gave him confidence.   Here is a video:

Disney and Shands

This weekend we went to Disney World!!   We had a great time, but Jim Beau was not really into the rides.  He did not like the dark and the noise!   But, he was a good boy while Jane Ritchie enjoyed everything!

On Tuesday morning we left Orlando  early and headed up to Gainesville.    Jim Beau had a 9 a.m. appointment at radiology to test for reflux so he wasn't allowed to eat or drink anything for 6 hours prior!     He did not like being still for the test and cried the whole time.   He had to drink strawberry flavored contrast.  yuck!

After the test we spent some time with our new friend Kimberly who raises money for Dr. Kays.  She called us on Friday while we were driving to Disney to ask if we would do an interview about CDH and Dr. Kays.  We did the interview and then a photographer met us at our appointment with Dr. Kays to take some pictures.    Hopefully it will turn out great, although Jane Ritchie refused to be in the pictures!    

We have great news to report!   Jim Beau shows NO signs of reflux!   This is great news because it means that he won't need any surgical intervention.  The bad news is that it means he's just plain picky with what he eats and Mama has to get him to eat more.   Dr. Kays said that even though he wishes Jim Beau had about 5 more pounds on him, he looks great.  He mentioned that he looks like he has grown into his head finally.  :)     Xrays also showed that everything is fine with his diaphragm.    We don't have to go back to see Dr. Kays for another year but we have a cardiology appointment in May.

We went up to the NICU and saw our nurse friend Andrea, and we also ran into another CDH baby from Birmingham, Par and his parents.  We have never met in person but had emailed back when Jim Beau was in the hospital.   They had also been to Disney, so Par and Jane Ritchie talked all about Dumbo!    It was nice to see an older CDH baby doing so great!!  

Jim Beau continues with physical therapy once a week.  He isn't walking on his own but will cruise around furniture and LOVES climbing.    I think we are going to meet with a nutritionist some time soon as well.  Hopefully I can get some tips of how to get more calories in the boy!

Thanks for all your support and for keeping up with Jim Beau!

3,065 dollars and ear tubes

So far, friends and family have donated $3,065 to the CDH fund at UF in honor of Jim Beau's first birthday.  Wow!   I cannot say thank you enough.  We wanted to do something to give back to Dr. Kays, as well as celebrate Jim Beau's first year as a survivor of CDH.     We truly believe that Dr. Kays has a special way with these babies.  His CDH program needs financial support in order to further research and education so that more babies can be saved.  Below is the letter I sent out back in November.  If you would like to donate, please do!

Jim Beau got tubes in his ears on Jan. 24.   We hope this will stop the ear infections, but I already think he is getting another one!  He was a good boy for the surgery, which only lasted about 10 minutes.  He was exhausted and cried for about 30 minutes afterwards, but was fine once we got home.    He continues to have physical therapy once a week at our home, which he loves.  We are hoping that he will be walking in a few weeks because we are going to Disney World.   I'm not sure how close he is to walking.  He does great with cruising, but hasn't really let go to try to go on his own.  He LOVES to climb as you can see.

Paul thinks that he is "talking" more now that he has tubes, but I'm not sure.  He isn't really saying any words except "hey", "bye bye", "daddy" and "no".  Every once in while we think he says something else, but we can't tell!    This is a big change for me since Jane Ritchie was talking at about 8 months!

I am still a little concerned about his eating.  He still loves his formula and would drink it all day if he could.  I finally got him to eat pasta.  He likes the wagon wheels.  The other day I combined elbows with wagon wheels and he would only eat the wagon wheels.    He doesn't have to taste something to know he doesn't want it.  He will touch it and make a face and throw it on the floor!     He loves fruit, but not so much the veggies.  He will eat sweet potato fries and sweet potato pancakes, though.

We go to Disney World over President's Day Weekend and will go straight from Orlando to Gainesville for a check up with Dr. Kays.   Hopefully it will be good news!

________________________________________________________________________________


November 30, 2010


Greetings from Kings Bay, Georgia!  We are doing great and are looking forward to celebrating Jim Beau's first birthday, as well as his first year as a survivor of Congenital Diaphragmatic Hernia (CDH).  You may think it strange to call him a survivor, but with a 50% mortality rate for CDH babies, he truly is a survivor.


In honor of Jim Beau's first birthday, we are asking our friends and family to donate to the Congenital Diaphragmatic Hernia Fund at the University of Florida College of Medicine.  This fund is controlled completely by Jim Beau's surgeon, Dr. David Kays.


I'll try not to bore you with too many facts, but we feel strongly that financial support of the CDH Fund can help save the lives of other babies born with CDH.  When I first met Dr. Kays, I told him that I did not think I could handle being around "all this Gator stuff!"  He told me, "Once we save your baby, you'll be a Gator fan for life."  He was quite right.


UF & Shands have the leading survival rate for CDH babies.  Since 1992, the CDH survival rate at Shands Children's Hospital is unprecedented.  According to the Annals of Surgery (September 1999), the survival rate was 89% of treated patients sent to Shands from another hospital and 92% of consecutive patients with isolated CDH who were both born and treated at Shands Children's Hospital.  A diaphragmatic hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest.  This may severely limit the growth of the baby's lungs, causing life-threatening respiratory compromise at birth.  Successfully treating these babies requires a complete understanding of the problems encountered with these lungs and recognition that some of the therapies still considered standard at many hospitals are actually harmful.


The goal of the CDH Fund is to help refine techniques, publish data, and to teach locally, regionally and nationally.  The funds are used entirely for CDH research, education and program development initiatives that Dr. Kays directs.  In order for other hospitals to increase their survival rates, Dr. Kays needs financial support.


Please send whatever you can to the CDH Fund this month in honor of Jim Beau's first birthday (November 30).  They can use any amount.  If you were going to send Jim Beau a $3 birthday card, send $3 to the CDH Fund instead.  We trust Dr. Kays with Jim Beau's life; we know you can trust him with your dollars.


If you have any questions please give Kimberly Hankerson a call at 352-265-0646.  She works with Dr. Kays to raise money to support his programs.  Donations are completely tax deductible (Tax ID # 59-0974739).  Checks should be made out to University of Florida Foundation and mailed to:


David W. Kays, MD
Congenital Diaphragmatic Hernia Program
c/o Department of Surgery
University of Florida
PO Box 100286
Gainesville, FL  32610-0286


If you are able to send a check, please indicate that you are donating in honor of Jim Beau Reinhardt.


Thank you so much for taking the time to read this letter.  As always, you can check up on Jim Beau's progress at www.ananchorforthesoul.blogspot.com.


Love,
Mary Abigail, Paul, Jane Ritchie and Jim Beau