Happy Thanksgiving

Happy Thanksgiving!

We are thankful for so many things this year. We are most thankful that we were blessed with a beautiful, strong, baby boy this year. We are thankful for a supportive and united family who loves our baby and cares for him daily. We are thankful for Walk With Me, our wonderful Pallative Care program that cares for our Son.

We are thankful that Nicky is able to experience so many things that all little boys experience. We are thankful that he was able to swim in his first pool this summer, and play in the leaves this fall. We are thankful that he had his first Easter, Halloween, and in a few hours, his first Thanksgiving. We are thankful that he will join a family tradition, and cut down a Christmas tree with us this weekend. We are thankful that Christmas is approaching, and can't wait to help him unwrap presents, and play with him in the snow. These are the times we cherish, as should every family, for we have no idea how long they will last.

We are thankful for the amazing outpour of support from family, friends, and the community. We are thankful that we are able to afford optimal care for Nicholas because of the support.

Nicky is doing well, and I want everyone to know that you are all part of this journey. Your support is helping our Son.

Over the past 4 weeks, we have seen significant improvement in his neck strength. He is still seizure free from what we can see, he is breathing well, managing his secretions, and we believe he makes eye contact from time to time. He is still vocal, and expresses discomfort more than we have seen in several months. We believe it is because his little teeth will break soon; he calms down when his Mommy applies a special ointment!

Last week, we met with genetics and neurology. We did not learn anything new at the genetics appointment, but the neurology appointment was positive. The doctor was happy with Nicky's improved muscle tone, movement, and the reduced seizures. He attributes the improvement to the reduced seizures and responsiveness to cofactors, which are basically vitamins. He commented that 1 in 10 children are very responsive to cofactors, and we are hopeful they are working for Nick.

Nicky is a busy little man. Outside of his daily therapy and nurse visits, we have him involved with a Kinesiologist and an Alternative Health Care Center. They will provide therapy to help with his brain and body connection, and nutrition supplements to improve cellular function. We also start Hyperbaric Oxygen Therapy next week which we hope will improve Nicky's energy.

I am thankful to all of you this Thanksgiving. Thank you for uniting with us, and loving our little boy. Thank you for the prayers, hugs, and strong words of support. We thank you, and Nicky thanks you. Happy Thanksgiving to you and yours!

Love, Dad

In the Loop!

Nicky's fundraiser at The Loop Hair Salon was fantastic! There was a very good turn out, and Nicky actually made a quick visit to see everyone! We'd love to thank the owner, Gina, as well as her entire staff for dedicating their Sunday to help our son out!! These women took time away from their families to help support ours. For that we are forever indebted to each of them.

A thank you for the folks that stopped by to pamper themselves as well!! We could have not done this without each & every one of you!!!

All of our love, Nick, Jenn & Monkey

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

Our Story Airs

So we just received word from Rhonda Clark & our story will be aired this Wednesday, NOvember 4th @ 11pm on Channel 4 news. They will be running promos from the evening prior until the night it airs. If you feel so inclined, please pass this information along to your friends & family so we can continue to bring awareness to this horrible disease.

Monkey's Fight

It's been a few weeks since our last blog & wanted to report on how the lil man is doing. So we're 4+ weeks since nick's last seizure. The new medication seems to have a good handle on his infantile spasms. We are so thrilled that he is doing so well. It's been a busy few weeks for the Torpey household. Rhonda Walker, from Channel 4 News, stopped by October 23rd for an interview on our son. We are waiting to hear back as to when it will air but it should be sometime this week. As apprehensive as we were initially to have this interview, we are truly hopeful that our son's story will continue to bring awareness to this very rare & often times, unheard of, disease. We are hopeful that our story can reach those who are looking for support as well.

Nick also celebrated his first Halloween. We had a houseful of family over to enjoy in this wonderful day for our son. I must admit, he made a good looking monkey, that's for sure. We went around to the neighbors to show off our lil man & was able to get a few pics with his pal, Noah.

We are seeing some great improvements with our son. He is looking at us when we talk, has better head control & seems to be getting stronger with each passing day. I cannot express the gratitude our family has for the continued support & prayers. We are truly blessed to be given such an amazing support system in our family, friends & community. We look forward to our next fundraiser this Thursday which reminds me that I should be working on the raffle baskets.

With all of our love, we thank you!! The Torpey's Jennifer, Nick & Monkey