gradys all stars

It has been a long time since my last update, December and January were crazy months for us. I would first like to send a huge THANK YOU to Payroll Solutions for providing the entire family with wonderful gifts under our tree this year. Things were so crazy with us and by everyone at Payroll Solutions pitching in to play Santa really made our holiday season.

Some of you are aware of why we were so busy but most of you don’t know. Trent was selected to be the second child to receive Gene Therapy at Cornell. His surgery was January 11, 2011. I thought it was a good date 1-11-11! The procedure was initially planned for November and then December but was cancelled each time due to various reasons beyond anyone’s control. Trent was admitted to the hospital the Sunday before for an MRI and blood work. Tuesday was the big day. The operation took around 8 hours from the time we left him in the OR to the time he was in our arms again. The first night after surgery was a little tense with him waking up and trying to get him to drink and eat a little. The next day he had a post-op MRI and when he woke up from that he was “Back to Normal”. In fact he was doing so well he was discharged from the hospital later that day. It took him one more day to be completely base line Trent. Chris left New York on Friday but Trent and I needed to stay for two more weeks for follow-up appointments. We had many visitors and we made new friends. Trent recently had his one month follow-up and the doctors are impressed with him. At the time of his operation he was the healthiest child who has participated in the Gene Therapy trials at Cornell. Here is where I must thank Drew for giving the opportunity to his brother. Thank You Drew!!!! I am hopeful that this procedure will lead to a cure in the future!!

Drew is doing well but he missed his mom. For the past several months Drew has been having horrible bouts of Dystonia, the flu and colds. He will be doing well for several days then have a few bad days. We are working with new doctors in New York to control the Dystonia and make adjustments to his medications. He still loves his family and school. He lets us know with smiles and giggles.

We have several events coming up and as always the Oggie Open in the summer. There will be only a few events this year for Grady’s All Stars. This year we are going to focus on Pennsylvania Batten Disease Support (PABDS) to raise awareness and help other families in PA. I will post our event here as well.