Girly Girl competed in her first gymnastics meet this past Saturday. She placed 5th place on the Beam and Uneven Bars & 6th place on the Floor and All-Around! We were so proud of her!
Way to go, Girly Girl!!!
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!
We arrived at Cincinnati Children’s Hospital about 30 minutes early for Button Boy’s appointment with the GI Specialist that is one of the foremost doctors studying Eosinphillic Esophagitis. As we were waiting for the clinic to open, Dr. Shehzad Saeed, Harris’ GI doctor from Children’s Hospital in Birmingham, Alabama, walked through the lobby and stayed with us most of the morning to help Harris relax — and, I hope, because he feels an attachment to our family. We met with Dr. Franciosi, and he went over what the week would/should look like. He asked a lot of questions…and decided that Button Boy would need to stay in the hospital overnight Monday because he was having an “impedence probe” placed, and they needed to be able to monitor his ins & outs.
Button Boy tends to be very anxious when we are in the doctor’s office, I know that is typical for some children, but Button Boy refuses to make eye contact, talk, and usually hides behind me. We have learned that if he is going to relax then we have to explain what things are going to take place while we are in the doctor’s office. I don’t think Dr. Franciosi really understood that because Button Boy ended up pitching a fit when Dr. Franciosi made him lay down for a hemocult exam. He screamed and hollered…and is still talking about it! Traumatized for life, I’m sure! During the appointment with Dr. Franciosi, Dr. Saeed was there with us…he asked some questions to help get some clarified answers from Dr. Franciosi and he was there as moral support. It was amazingly overwhelming to realize how much research has been done, and is still going on compared to how little they know about EE.
Cincinnati Children’s Hospital is not only a hospital that concentrates on Children’s health, but it also is a teaching hospital and a research hospital. We were approached by two different Research Coordinators regarding some research that is being done during the stay with the CCED clinic. The first young lady that came and talked to us was right after the appointment with Dr. Franciosi. Her study has to do with genetics and EE. Button Boy had a few more biopsies done and a little extra blood taken after he was sedated for his EGD. The family (me, Mojo, Girly Girl, Grandmommy & Granddaddy) took part in a portion of the genetics study…we had to SPIT in a small cup. They retrieve DNA from the SPIT and are able to put the information they get from the study in a group to compare how genetics plays a role in EE. It is very interesting to know that just some SPIT will help them determine some avenues of treatment. The second young lady met us on Thursday, so I will explain that when I recall Thursday and all it brought to our lives.
Unlike Children’s Hospital in Birmingham, AL, we were able to go all the way into the operation room. He was extremely worried prior to the EGD and we had asked for him to receive some Versed to help him relax. Instead of getting the Versed, though, the Nurse Anethesist let us know that we could walk with him into the operation room and give him a big ole kiss while he was being put to sleep. When he was told that, his attitude changed completely! He was more relaxed and as ready as anyone can be before they go into a surgical procedure!
The night in the hospital went okay. Button Boy did not talk a lot because of the tube going through his nose and being anchored into his stomach. He would tell you it is not fun, but not too painful, just irritating. So, that day we just sat in the hospital room watching cartoons and trying to get him to drink so they could take out his I.V. When they were finally able to take out the I.V. we walked around a little bit and found a movie or two to watch. Girly Girl, Grandmommy & Granddaddy came by to say hello before they went to eat and back to the hotel for Girly Girl to swim. Mojo decided that he would leave me with Button Boy, and he would hang out with Girly Girl. The next morning he was scheduled for his allergy testing. The probe was pulled out and we had to put Harris in a wheelchair for the rest of the day.
At the allergy testing they did 75 skin pricks. Button Boy *really* did not like having these done. They were not as bad as shots, but they do have to get the allergens under the skin, so they do prick it a little. After waiting for 20 minutes or so, the Allergist, Dr. Abonia, came in to read them….evert single spot that the test was given showed a negative read. That means according to the skin pricks, his reaction did not show any red places that were elevated and itchy to compare to the histamine response that was placed last. So, take away from this part — no food allergies!
After finishing the prick test, he was given a patch test. The patch test contained little “wells” that had a puree or liquid type of the allergy. The only things that were not tested were lamb (they were out of the paste for it), shrimp, chocolate and cinnamon. In the past, the cinnamon was his highest allergen. Button Boy had to wear the patches from Tuesday at 1:30 (EDT) until Thursday at 1:30 (EDT). The tape that they put the patch wells on with just tears Button Boy’s skin to pieces. He isn’t allergic to it, but it pulls at least one or two layers of skin….and he cries and cries…i don’t blame him, though….it is frustrating to have things like that done to a little guy that has been through so much….and knows what will probably happen….
Tuesday was a long day. After the patch testing and getting released — we decided to take Button Boy and Girly Girl to a Cincinnati Reds game. Mojo and I love baseball, even though we don’t get to go as much as we would like. This past Christmas, we gave Mojo a six pack of season tickets to the Montgomery Biscuits, and he has been taking the kiddos with him and they will actually sit and watch the game! So, it was no surprise to us that they *really* enjoyed the game! The Reds have a new hot-shot relief pitcher named Chapman. He has been all the talk around baseball over the last week. He was clocked throwing a 105 mph pitch at his Triple A club….Tuesday night, we saw him pitch a 103 mph ball! It was wild! He also has a great “change up” that averages about 88 mph. So far he has an arsenal that no one is able to master — yet.
~~COMING SOON….THE REST OF THE TRIP!~~