Support for Nicky

I returned home last night to find my Son wide awake and cooing as if he was excited to hear all about his big party! He truly is an Angel.

I hugged and kissed him just like everyone asked, and we had a long talk before I tucked him in for bed. As we talked, I know he found comfort in my voice as I explained that 416 people were in his corner last night to support his fight with this terrible disease! I know this made him happy.

He was happy that his Grand Parents, Great Grand Parents, Aunts and Uncles, cousins, friends, neighbors, and even strangers were at his party to support him and celebrate his life.

I know he feels the love; I know he feels the prayers. I know this gives him the strength he needs to keep fighting.

Thank you to family and friends. I know it has not been easy, and I can not put in words how much I love you and appreciate your dedication and hard work for my Son.

Thank you to the people in the community that did not know my Son, but found it in your wonderful hearts to help him. You are now forever a part of my Son's life, our hearts, and this journey. I will never forget the friendly and comforting conversations with each of you and it is a honor to have your support.

Thank you to the Shores Sentential and Channel 4 for the publicity. Thank you for telling our story and honoring my Son's life.

All things considered, Nicky is doing well. If there is any seizure activity at all, it is difficult to see. His Physical Therapist commented this week that his arm strength has improved. I notice that his legs are a little stronger. He has recently gotten over a cold, which tells me his immune system is still functioning. He seems to display more emotion than he has in months, such as fuzziness when we are changing his clothes. He is managing his secretions much better. His breathing has become more natural, rather than labored. His digestive system is still working well, and in fact, he is gaining a lot of weight! Nicky is 17lbs now, and has gained 6lbs since August 13th.

We are being as proactive as possible in helping him with his condition. Our Physical Therapist ordered a neck brace and custom chair to help him with core strength and posture. He recently received a flu shot to protect him against a life threatening illness.

We are also making significant changes to his health care plan, and investigating an experimental treatment outside of the U.S.

He has also started to see a Kinesiologist who has a good understanding of brain activity, and believes he can reduce the potential for seizures by conditioning the brain cells through different exercises. This will in turn allow us to lower Nick's seizure medication, and allow his brain to develop.

I am also trying to meet with a reputable Alternative Health Care clinic that specializing in nutrition, and can provide supplements and diet enhancements that will protect Nicky's vital organs against the seizure medication while also helping him reach his full potential.

In addition to all of this, we hope to start Nicky's Hyperbaric Oxygen treatments again soon, which theoretically help a number of things, such as improved energy, digestive system, sleeping patterns, and brain cell activity.

All of this is possible because of your support. I again, thank all of you.

My baby boy continues to fight, and I am proud of him. I said it before, and I'll say it again. My boy is resilient. He is a Torpey, and he is strong!

Love,

Dad