Love Transcends

Our son is 8 month's old today & has gone 3 amazing weeks without 1 single seizure. I cannot be more proud of this lil man & the fight he has within. Each day that he continues to fight, that he continues to get strong, is a day to celebrate in my book. A day for me to embrace, hold on to & cherish forever. Through this journey, I have come to TRULY realize the significance in life, what truly matters to me. I had so many dreams & plans for my son, like I had already scripted his future for him already (in many ways, I think most parents are guilty of doing such). But throughout our diagnosis, a wise man said to me "Sometimes the dreams we have for our children may not be as we had planned but have always been God's plan" This brings so much comfort to me (:

Like I mentioned, my outlook on life has changed in so many ways. I was raised by a strong, loving, supportive & nurturing family & have never taken for granted how blessed I am. But to be honest, I think I got lost along the way in my early adult years. What once mattered to me no longer does or at least doesn't measure as high as it once did. I only hope that everyone can recognize what is truly important to them, be true to it & appreciate what they do have w/o having to go through something life altering in order to get to that place.

This week has been a crazy busy one for us.. Family pics on Monday, which monkey slept through the entire session, despite 3 wardrobe changes. The photographer did an amazing job & dedicates a lot of her time to working with family's with terminally ill children. She posted just a few pics on her blog & we are anxious to see how the proofs turn out. If you would like to check the few out, please go to her website @ www.reflectionsbyheatherbrown.blogspot.com

Nick & I initially struggled with opening up our lives to everyone outside of our immediate family once we heard the diagnosis. But through the support of our wonderful family & friends, we have not had 1 regret in sharing this with everyone. Guess when you go viral, you need to be okay with letting anyone & everyone know. We have been very fortunate to be lined up with Channel 4 news. Rhonda Walker will be coming by tomorrow to meet with us & I must admit I'm very nervous. But what a great opportunity to shed light on Mitochondrial Diseases & our son's condition. I can only hope that this forum provides us with an opportunity to bring awareness to this rare & very underfunded, under-researched disease.

I need to get some rest & hope that every one of you reading this today will be comforted by the good in your life! I hope that you will kiss your loved ones & remind them how much they are loved!!

Beautiful Poem written for our son

Nicky's Life,
Nicky was born out of love one day to be broght upon this earth in God's own way.

One day this child took a flight only to find out he was fighting for life.

His parents and loved ones care for him so much, so we pray to you Dear God for the miracle of your touch.

Our dreams for Nicky's future is for a beautiful life for this little loved one will not give up his fight.

As we stand by his side we know God you are near because when you look into his eyes he is giving you a cheer.

Love,
Diane Radford

My Toothies

So our little monkey has been fairly feisty this week (one could argue who he gets that from). Come to find out, the poor little guy has 2 of his bottom teeth coming through. I feel so bad for him & when I massage his little gums, I see the relief in his sad lil eyes. It's hard to believe the journey we have been on these past 3 months but I am so very thankful for every minute I get to cherish with this beautiful little monkey. He brings so much joy to our lives & is truly a gift from God. It's has been 2 full weeks since we've seen a seizure. He is adapting well to this medications (: I can't tell you how much weight has been lifted off my shoulders because of this milestone. Though the doctors tell us the seizures will only get worse, medications will eventually no longer help, I still find comfort & peace in celebrating what he has overcome with each day that passes.

As I look back, I find it so crazy that he will be 8 months on the 21st of October. Time has truly passed right by me. I can remember the first time I felt him kick, hiccup, somersault inside me, the first time I saw his beautiful little face, the immediate bond we had, the first time I kissed him, the first smile we shared together, the first giggle, the first time he nuzzled against me The overwhelming love a mother feels when they first have the chance to meet the angel that has been growing inside of them. We all have been through a lot but one thing is for sure, our love has never wavered, it's only gotten stronger!!! On that note, Happy Friday!!

Successful Fundraiser

Today, I want to thank each and every person that celebrated my Son's life. Thank you so much!

Thank you to the always reliable immediate family, who were by my Son's side every single day he was in the hospital, and have yet to leave his side.

Thank you to the extended family and dear friends, who are helping in so many ways, and willing to do anything to support my beautiful baby.

Thank you to the friends who we do not speak with as often as we would like; your support gives us strength.

It is not easy to stay strong. It is not easy to stay positive. A very dear family member said to me, not too long ago, that he saw me smile for the first time since Nicky became ill. This is because we found something that gave us hope.

Today, because of you, we again have hope. Today, we can smile.

I held my baby as he fell asleep tonight, and kissed him goodnight, and I will dream he will defeat this disease. I will dream he will remain seizure free, and continue to coo, and move his arms and legs.

Thank you for making these dreams possible. Thank you for making tonight possible. Thank you family. Thank you friends.

Love, Dad

First Fundraiser on 10/8

First things first, how about some positive news? It has been over 24 hours and Nicky has yet to have a visible seizure! In addition, he slept like a champ last night. That's my boy!

Although the neurologists are quick to remind us that his condition will continue to regress; we really do not care for much they have to say anyway!

It is hard to believe that Nicky's first fundraiser is less than one week away. If anyone has yet to RSVP, please know that you are still welcome to attend, but we would also love to have your support at our next fundraiser on November 5. Those details will soon follow.

The auction items that we will have at the fundraiser our amazing, and we hope to send a list to everyone prior to the event. We have vacation packages (www.sheratonsteamboatresort.com), exclusive sporting event tickets (50 YL, Rw 6, Lambeau Field), autographed sports memorabilia (Al Kalin ball and bat), gift certificates ($1K laser treatment), jewelry (Ahee, Lucido, Maloof), and several other incredible items.

Asking for help is not something that came easy to our family, and I want to thank each and every person for the incredible support. You remind us that there are still a lot of wonderful people in this world, and you give us the strength to continue this fight.

Well, it's time for NFL pregame. My Son and I are going to relax and see if the Lions can make it two wins in a row! We will also have a visit from our friends Joel and JoMarie today, who are always great company!

Thanks again to everyone who has helped with the fundraiser, and we are looking forward to seeing you on Thursday.

Love, Dad

Nicky Update

The neurologist diagnosed the type of seizure our Son is experiencing.  They are called infantile spasm seizures.  The label alone is heartbreaking.  No infant should experience such discomfort. 

Although they are always painful to watch, Nicky's seizures have improved over the past couple days.  Rather than having several, that would last 10 minutes or longer, he is down to one or two a day, lasting under 10 minutes.  Hopefully the increased dose of medication, and this new medicine, topirimate, is helping.  Although we do not like adding more medication, we are grateful for every minute he is able to rest.  We would give anything for him to have a good night's rest. 

Nicky has also did well in Physical and Occupational Therapy this week.  Susanne and Lisa are doing a great job with him, and they are very consistent, which is what he needs.  They put this poor boy through a work out!  He has a long way to go, but it good to see him move his arms and legs.  He also shows emotion through adorable grunts and coos; it is as if he is telling the therapists to leave him alone!

I would do anything to stop this disease.  I say it weekly, sometimes daily, that I would trade places without hesitation.  If someone told me to jump from a cliff, and Nicky would feel better, I would jump without hesitation.  Alas, it is not that easy, and we must continue this fight, and stay strong for our baby boy, and find something that will help him!  

My boy is resilient.  He is a Torpey, and he is strong!

Love, Dad