More about Cincinnati

6 Sep

So, Tuesday night was the Red’s game.  We really enjoyed it!  Nothing like some baseball when the team is in a penant race, even though the Red’s were in 1st by about 6, it has been a while since they were in this position and the crowd was pumped!  Button Boy and Girly Girl really enjoyed it, and stayed in their seats to watch the game instead of wanting to walk around the stadium to see everything else!

Wednesday was the Tour Day!  We met another family who was at CCED (Cincinnati Clinic for Eosiniphillic Diseases) from Wisconsin for their daughter.  We had an hour long lecture about Eosiniphillic Esophagits.  Girly Girl and Button Boy both took notes, and Button Boy asked a few questions!  It was so nice to see him listening to the explanations and really understanding some of what is happening to him.  After the lecture, we headed to the research facility.  It was very very cool!  We were shown the refrigerators and freezers where they store the samples from the research programs and from the clinics (we were able to donate some of Button Boy’s biopsies and blood during his EGD procedure).  We also met a researcher who is in her POST doctorate degree….in other words, she has  doctorate and *still* in school!!!  She explained to us how they took the biopsies and read them for the Eosiniphil cells.  She took us to a microscope that had a computer screen attached to it so we could see the Eosiniphil cells compared to the normal cells.  It helped us understand that this disease has NO cure.  It is a chronic condition that Button Boy will struggle with all of his life, but hopefully they will come up with a way to treat the symptoms and help reduce the inflammation.

Wednesday afternoon we went to the Aquarium in Newport, KY.  It is nowhere near as big as the Georgia Aquarium, but it was also less crowded.  We were able to see them feed the Otters, got to see Penquins playing in the water, and feed Lorakeets nectar!  But I believe the winner was their shark touch tank.  It has about 5 different varieties of sharks and we got to touch most of them!

After the Aquarium, we went in search of food.  A particularly fun activity for my family, and difficult with Button Boy on his elimination diet (no soy, wheat, egg, nuts, dairy, fish, & cinnamon).  We found a “hole-in-the-wall” called The Red Squirrel.  Mom and I had a Hot Brown, which if you have never had one…OMG, THAT IS SOME GOOD EATIN’!  My dad had an omlet with chorizo sausage in it….Mojo had a BLT (of course!)

*NOTE*  Girly Girl’s birthday was Thursday, it was a fun celebration of her life, and I will share it in a seperate post!

Thursday was a day that we had been anticipating the entire week.  The results from the EGD and the impedence probe.  The biopsies had to have a total of 15 Eosiniphil cells per biopsy to get a positive read.  Button Boy’s Eosiniphil count was stopped when the biopsy read was at 235 Eosinphil cells.  TWO HUNDRED THIRTY FIVE!!!  That in itself was enough to send me over the edge….the next news was the the Ph Probe (the impedence probe) that did not show any reflux….that was some good news.

Once again, we were able to spend time with Dr. Saeed.  He came into our appointment with Dr. Franciosi.  I relaxed a little when he came in because I knew that with him in the appointment he would ask questions to assist in explaining what we didn’t understand.

Thursday we also met with a researcher involved in a clinical trial that is being directed by her and Dr. Rothenberg.  Dr. Rothenberg & Dr. Franciosi are the two doctors in the world that you want treating EE.  So, we are confident in the research they are doing.  We also realize that this is a *trial*.  In this trial they will be testing Flovent (in a larger dose than what Button Boy was on a year or so ago) with 3:1 receiving Flovent vs. a placebo.  The trial will be a double blind trial, meaning that neither the doctors or us know if we have the Flovent or placebo.  We use the dosage for about 3 months, then we return to Cincinnati for another series of tests.  We were asked to participate because Button Boy met certain criteria.  We sat him down, and explained to him what the trial entailed.  We told him that even if he got the “fake drug” (e.i. placebo) it would potentially help other children not have to go through everything he has gone through in the last seven years!  He chewed on that Thursday evening and told us Friday morning that he wanted to do the trial to help other children!  I am telling you, he  is a little boy with a big heart! 

We left the hospital that day hopeful that Friday would bring news of not continuing the elimination diet.

I will post Girly Girl’s birthday and Friday soon…also, expect a little something regarding our trips up to Cincinnati and back!!!

We want to thank everyone who has prayed during this week.  We certainly felt the prayers, and the best proof of this that I can give is that I didn’t cry a single time seeing Dr. Saeed or while we were in an appointment!  I was at peace and focused on my boy!

I also need to say, Girly Girl was a trooper!  She initially was not going to go to all of the appointments, but it ended up being very beneficial to have her there to support her brother.  She would talk to him, hold his hand and love on him!  She is such a little nurse!  I love you, Girly Girl!

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3 Responses to “More about Cincinnati”

  1. bamadawg1980 September 7, 2010 at 4:13 pm #

    Hot Browns are a regional specialty. Jonathan loved them!

    • EmmyJMommy September 7, 2010 at 4:52 pm #

      I’m pretty fond of them now, too!!!!

  2. Victoria September 11, 2010 at 8:56 am #

    I am so glad I found your blog! I run the very small eos support group for Alabama and work with APFED to coordinate political action for the southeast. We live in Hoover, and my 5 year old son has EoE. He was diagnosed in May 09, was treated at Cincinnati by Dr. Franciosi, failed swallowed steroids, failed 6 food elimination diet, is now tube fed elemental formula, has no safe foods, and is now treated by Dr. Markowitz in Greenville, SC (formerly of CHOP’s EoE clinic and the doc that trained Dr. Franicios). Please contact me at eosalabama@gmail.com. I would love for you to be a part of our support group!

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