Birthday Cake for Brendan!
Brendan is 9 years old. He loves soccer, baseball, hockey and likes basketball! He is a 4th grade boy who looks and acts like any other boy. The difference is that Brendan can't eat most foods. His body rejects food thinking it is a parasite. He gets really sick if he eats food. We want to change this! There are so many others with this disease that would like to change this too. Imagine your life without food...
From the moment Brendan was born, we knew he had reflux. Brendan had his first endoscopy on September 23, 2003, at 9 months old. We were not educated enough about Brendan's condition and told he just needed to be on a few medications and he would be fine. But... at his next scope, the doctor called to tell me that Brendan had EE and has had it since his first endoscopy but the pathologist did not read it correctly. As time went on, Brendan's food alleries were worsening. Brendan would barely eat and when he did, he ate like a bird. After every scope his biopsies were worse than the previous time. By last summer Brendan was only eating pork, white potato, corn, oat, and rice. Even on just six foods his scope in July 2009 showed extremely high numbers of eosiniphils in his esophagus. Brendan also had enlarged lymph nodes and they were getting larger. He had surgery to remove lymph nodes from his neck and also had his tonsils and adenoids removed. When the GI doctor called with the July 2009 biopsy results and told me how damaged his esophagus was, I knew we had to make a change.
In October of 2009, we got in to CHOP EE Clinic. We met with the GI, the allergist and a nutritionist all at one visit. We removed all foods from Brendan's diet. He could drink his Neocate Jr., but just had to increase the amount. He was the healthiest he had ever been. We made a decision, along with the EE team to have a G tube placed in Brendan. His G tube was placed on March 22, 2010.
Brendan currently eats potato. They did a biopsy/endoscopy on December 12, 2011 and he had 26 eos which means potato is a fail. But since he was symptom free we decided to continue and check again in March. He has a had a rough month though. He had pneumonia and is just plain not feeling well.
Pork and oat were taken away in August. He has failed so many endoscopies/biopsies in the past few years. We don't like scopes because he has lost oxygen the past few scopes. But we are hopeful in thinking that putting him in a deeper sleep with the anesthesia will work as it did in December 2011.
Brendan may also drink water, have Swedish fish, Push-Pops and Dum Dum lollipops. Everyone thinks that is so great that he can have these candies but he never eats them. He doesn't care for them - I guess after 9 years one would get sick of them.
Brendan continues to have symptoms and struggle with food. Brendan gets Neocate Jr. in his feeding tube through the night and drinks 2 8 ounce glasses of Neocate daily. The Neocate Jr. is what is keeping Brendan healthy and alive. Brendan currently sees a GI, Allergist, Nutrionist, Psychologist, Sports Medicine, Opthamology and Rheumatologist at CHOP.
CHOP has been wonderful to Brendan! They are one of the top hospitals for EE/EOS. We are very fortunate to be so close. CHOP is involved with research to find a cure and hopefully a treatment. Obviously it costs a lot of money so we are hoping to raise awareness and funds to someday help Brendan.
We are hoping that one day Brendan can celebrate his birthday with birthday cake!
Thank you so much for all you did to make the Skate Off for EE a successful event! Everyone seemed to enjoy themselves and had a great time!
Thank you to the Dell Family, the Skatium, Carl Card's & Collectibles, Carl & Sue, Lauren & Joe, The Scott Family, Shaun Young, Tommy Tunes, the Harris', Carolyn Hardy-Bachman, Marcy Lavoe, The Harris Family, Ian Lapierre, the Phillie Phanatic, The Bromley Family, the Girls Hockey Team, Paul Bogosian, Karen Penn, Carol Hand, Erin, Roz, Susan and all of the generous people that donated, all of the friends and family that came out that night!
You all made this night a success! When we hand in the money to CHOP we will give you the grand total!
RESULTS ARE IN :( from Scope today - August 20, 2012
RESULTS ARE IN and CORN is a FAIL. So now we have to make the decision to do steroids to have him be able to eat a few foods other than just potato. Did not want to do this and he can not do swallowed steroids so we he will do the FLOVENT 220. :((( Scope again in 2 months.
Brendan had a scope today and was put under anesthesia once again. He never shed a tear today when he fell "asleep" with us by his side. He kept looking to Tom on one side and me on the other and told us he loved us and "fell asleep".
He woke up cranky and very irritable. He also had his granulation "burned" off and he was in a lot of pain.
Once he was awake and had pain meds he wanted to get home. He rested briefly but then wanted to get a ball in his hands or feet!
He's a tough cookie!
Praying for good results by week's end!
Thank you to everyone for your support!