Sunday, May 6, 2012

Interview about Eosinophilic Esophagitis on 93.3 WMMR in Philadelphia

Thank you, 93.3 WMMR in Philadelphia, for doing a wonderful, detailed interview with Dr. Jonathan Spergel of Children's Hospital of Philadelphia and the Harris Family about Eosinophilic Esophagitis (EoE) and their upcoming fundraiser for The Center for Pediatric Eosinophilic Disorders at CHOP.  The Harris Family is doing a wonderful job of educating the public and raising awareness about eosinophilic gastrointestinal disorders!

The interview can be heard at WMMR's website via the following link:

Public Affairs - Eosinophilic Esophagitis - Weekends Blog | 93.3 WMMR: Everything That Rocks

The fundraiser, "Food Phight 5K", will be held on Friday, May 18th, 2012 at 2 North High Street in West Chester, PA.  Registration begins at 6 pm.  More information about the fundraiser can be found at www.foodphight5k.com or http://giving.chop.edu/site/TR?fr_id=1380&pg=entry

From the fundraiser's page on CHOP's website:  "CHOP's Center for Pediatric Eosinophilic Disorders currently treats 1100 infants, children and teenagers with an eosinophilic disease - the largest clinical population in the world.  Patients come from all over the U.S.  This clinical population provides an extensive source of data for research.

Currently, CHOP is leading 11 different research studies related to eosinophilic diseases and they are collaborating with other world class institutions. These advances offer high hopes for children who are suffering.  However, ongoing research costs a lot of money.  That's why we need your help."

I am also the parent of a child who is treated by specialists at CHOP's Center for Pediatric Eosinophilic Disorders and I have been very involved in the eosinophilic community for 8 years.  I can personally attest to CHOP's devotion to their patients and to research.  Please consider donating.

Friday, May 4, 2012

The G-tube is out!

I wanted to write a quick update with some big news:  Tonight, after 7 years, my son's G-tube is finally out!

He has been back on Flovent for a month with an unlimited diet and is doing well.  He had lost too much weight when he was back on his safe diet at the beginning of the year, so I was not sure that it was a good idea to remove it yet.  However, with the Flovent (swallowed, not inhaled), he is eating well, gaining the weight back and is growing again.

At his last appt (2 days ago), he had gained 6 lbs and grew another inch, so I knew it was the right time.  I want him to heal before the summer, and it can take 3 weeks for the stoma to close, which will take us to the end of May.

I didn't give him any advance-notice because that would have made him too anxious.  He was anxious enough as it was.  I just told him it had to get done and I did it.  The stoma is clean and covered and hopefully it will close up quickly.

While I didn't make a big deal about it because he was so nervous, this is a very big deal!   I had envisioned a big celebration when it happened, so it is a bit anti-climactic, but that's ok.  That part of his life is now behind him and he has a new chapter waiting to be written.

He only has a few more foods to trial, so we're going to do one a year.  We'll start in January and scope in April, just before his birthday, as we did this year.  That will give him a break from his Flovent and allow him to finish the remainder of his food trials while minimizing his procedures.

For now, while he is on the swallowed Flovent and it is working, he can eat anything he wants, so I am focusing on increasing his intake as well as expanding his repertoire.  So far, I am very pleased with how well he is doing and I hope he continues to do well.  He has overcome great hurdles and is now thriving.  There is finally some semblance of normalcy.  I am a very happy mom.