It has been a year since the diagnosis

Hello! I apologize for not posting any recent updates on Gavin’s blog as it has been very hectic these past few weeks. Ferd has been flying out of town on business to Mississippi and New York and the kidos have been sick with a bad ear infection. I had to fly my dad out here from Las Vegas to get some relief and thankfully he has been a tremendous help while Ferd is away for work. Gavin is doing ok for the most part, but continues to weaken which we do not focus too much on. There are days, however, when he surprises us with strength as he keeps on taking the extra steps on his gait trainer. Gavin has a special chair (Tumble Form Chair) which keeps him in an upright position and now he is also using it for sleeping which has been great! He has been having a lot of secretion lately so we have been using the suction pump. Gavin also had an EEG done in mid February to check for any possible seizures, but our neurologist said the results came out normal thank God!. He suggested to have another EEG just to make sure there are no active seizures. It has been a year since we got the tragic news of Gavin’s diagnosis- March 2, 2009 to be exact. Ferd and I are hanging in there and never giving up on hope. Our daughter Audrey Bella is now 15 months old and always keeps us entertained. She loves to sing and dance and kiss her older brother Gavin. On a good note, there has been some positive progress with the gene therapy consortium and researchers are hoping to have clinical human trials available sooner than 2012. God is truly answering our prayers and yours. Thank you for always continuing to keep Gavin and our family in your thoughts and prayers. More updates to come soon!