A Year Later after Summer Madness in D.C.; Gavin continues to fight strong!

It has been a year on June 29 since Gavin was in the PICU at Children’s Hospital in Washington D.C. last summer. It was such a crazy, scary, stressful and emotional roller coaster ride, but with God’s grace and all of you who have prayed for Gavin, he had managed to come home safely without the need for a tracheostomy or anything invasive. I know it has been a while since I have posted an update on Gavin, but today, he is doing fantastic! Though there are times when things are extremely rough with Gavin, and despite the cruelty of the disease he is battling, he continues to fight strong. Gavin has not been on continuous oxygen for almost 2 months now and is breathing on room air 90% of the time. Aside from his laundry list of medications that he is taking daily, he continues to see his faith healer every week and is also getting physical and occupational therapy, chiropractic and acupuncture treatment every 2 weeks. Gavin also enjoys aromatherapy everyday while he is on the vest getting all that gunk out of his system. Gavin is also getting so much heavier weighing a whopping 60lb. Everyday we always continue to pray for continued strength. On a good note, there are also wonderful things coming ahead. In 2 weeks, we will be taking Gavin on his first family Cali coastal road trip; we will venture out to Santa Barbara, San Luis Obispo, Paso Robles, Carmel, and Monterey to name a few. The annual Tay Sachs Disease Family Medical Conference by NTSAD will also be held in San Diego for the very first time in 2013. The research for Gene Therapy is making lots and lots of good progress and clinical trials are expected to take place in the Fall of 2012 where there is a possibility of 6 Juvenile Tay Sachs kids that will be selected for the first clinical trials. How and who they will select remains to be a mystery and we can only hope and continue to pray that Gavin will be one of those 6 kids. For now, we are going to enjoy every moment of Gavin and our family and leave everything up to God. Please continue to pray for our son who continues to fight everyday!!! Indeed there is hope!!!