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!

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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