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