Cookbooks are Here!!!!!!!!

Aiden's fundraising cookbook has arrived! I am so happy that I was encouraged to do this because it turned out so awesome. It was a lot of work but every second I spent on the book was worth it. Thank you to everyone who participated in making this book come alive! I couldn't have done it without you and I look forward to the day that I can show Aiden just how much he loved by his amazing family and friends!

In less than a month, we will be beginning Aiden's journey to remove his nevus through plastic surgery. He will be having tissue expanders placed that will grow new skin to replace his nevus skin. It won't be an easy process but I am confident that we can get through this with all of the support from our wonderful family and friends.

It's hard to believe that its coming up so soon. It seems as if it was just yesterday that I was calling the office to book his surgery. For those of you who don't know, Aiden's surgery will take place in Chicago with Dr. Bauer. After searching a ton of plastic surgeons, we felt that Dr. Bauer was the right choice for Aiden, based on his level of expertise in nevus removal. Aiden will need at least four surgeries so we will be spending a lot of time in Chicago over the next year or so. Several of my fellow nevus mommy friends have made these cookbooks to help them out with the costs of traveling out there and I fell in love with the idea. The cookbook also helps bring awareness to his condition and that is very important to me.

All of the proceeds from his cookbook will go towards medical expenses not covered by insurance, hotel, and airfare. If you are interested in purchasing a cookbook, please let me know. We are asking $20 for each cookbook. If you live in my area, you can stop by to pick one up or we can arrange for us to meet up somewhere. If you live out of town, the cookbooks are available to be purchased on the blog for $25 with shipping. You can also help out by letting your friends and family know about the cookbooks!

Thank you so much ahead of time for caring enough about Aiden to help us out. It means everything to us!

Here is what the cookbook looks like! It has 400 recipes submitted by friends and family! 

Nevus Pool Party

We had a nevus pool party at my house over this past weekend and it was a blast. I was so excited to be able to get to know some of our great nevus friends better and meet some new people from our area. There was 17 of us who were able to gather together for a fun day! 

It was a great day for swimming and most of the kids couldn't wait to get in! You should have seen this little four year old year named Jestine. She was unbelievable in the water. I thought for sure she had gone through swim lessons but her dad taught her himself. She jumped right in and off she was in the deep end, swimming away. She even dove off the diving board, which she had never done before. The other two girls, Brianna and Naomi had a blast playing with her! After a few hours of swimming and hanging out, my husband cooked up some hamburgers and hot dogs! The kids couldn't get enough of the pool so they went back in until the dessert came out! 

It was so nice to hang out with everyone! We had lots of laughs and good conversations! We can't wait to be able to hang out together again! We are hoping that each time we can continue to grow the group and meet more awesome people! Thanks to everyone who came out and joined in on the fun! 

Kids having fun swimming!

Adult nevus owners with the "Got Spots?" Cake

Some great friends!

Nevus owners minus Aiden...he decided to fall asleep for these pictures! LOL.

Family Fun with the Barba's 

Angel, Aiden & I

Fundraising Dinner For Aiden

Aiden and I recently traveled with my mom to Michigan to visit our family! We were so excited to finally introduce Aiden to our huge family but we had no idea just how special this trip would be.

When my grandma found out I was putting together a fundraising cookbook to help out with travel and medical expenses, she wanted to help out in another way as well. So my family started planning a spaghetti dinner to help raise money for us. They designed a flyer to tell people a little bit about Aiden and why we needed to travel to Chicago for his surgery. It was an all you can eat spaghetti (and much more) dinner for $5 with all sorts of basket raffles and 50/50. My Aunt Amy was the mastermind behind putting this all together. She does event planning so this is right up her alley.

It was held at my Aunt Barb's house on Saturday, June 18th. When I arrived there, I couldn't believe what I saw. There was a ton of food (most of which was kindly donated), several baskets to raffle off, a 50/50 drawing, and 2 Authentic Red Wings jerseys signed by Datsyuk that people could buy tickets for. The baskets were donated by family and friends and they were amazing. People couldn't stop buying tickets to increase their chances! Here are some pictures of a few of them.

Perfect for the 4th of July

This one was extremely popular! It had 4 tickets to Detroit Tigers game!

Another popular one

I couldn't believe how many people were showing up for Aiden. It was so incredible. I was also excited to educate people on CMN. My Aunt Amy asked me to speak just before the drawings. It was hard...I started crying right from the beginning. I felt so blessed to have such an amazing family who did all of this for my sweet little Aiden. Then Amy was handed an envelope to read in front of everyone. It was a surprise that no one knew about from the local Sheraton Hotel. Their employees participate in $5 jean Friday's and then donate the money to all different causes. They had a gracious donation of  $250 to give to Aiden. WOW is all I could say.

Everything about the day was perfect. There are not enough words to describe how thankful I am for my family putting this together. They raised a total of $2884!!!!!!! It was so much fun and I will never forget what my family did for us!

Some more photos from the day!

Aunt Amy enjoying the delicious dinner!

Aunt Jennifer with one of the signed jerseys

Aiden enjoying time with Aunt Kelly

Aiden with his great grandma

Cousins swimming!

Life Can Bring the Unexpected

Hello everyone!

For those of you that know me well, you may be surprised that I am starting a blog. Believe me, I never thought I would be doing this either. I have decided to do this for a few reasons. First, I hope to provide the same support and comfort to other nevus families that I have received along the way. Second, it is a wonderful way to increase the awareness of CMN. Lastly, I know there are a lot of people who care about Aiden and are interested in hearing about his progress. 

For those of you that don't know a lot about my son, let me fill you in. Aiden was born on November 1, 2010 with Congenital Melanocytic Nevus (CMN). Let me break down what that means: Congenital simply means "present at birth", Melanocytic means "pigmented" and Nevus means "birthmark/mole". These birthmarks can range in many different sizes and locations on the body. His is located on the left side of his chest (about half way), around to a small portion of his back and most of his shoulder. Based on the size that his nevus would be as an adult, Aiden's nevus has been labeled giant, which occurs in 1 out of 500,000 births. He was also born with about 42 smaller nevi, also known as satellites, throughout his entire body. Unfortunately, the satellites can continue to multiply throughout his life. Today he has about doubled (I stopped counting) the amount he had at birth. 

We had no idea any of this was going to happen so we were quite surprised when he greeted us for the very first time. It didn't help that the hospital had never seen it before. All they had to tell us was research off the internet and there was nothing good that came from that. They couldn't tell us too much about the condition except that he would be at a higher risk of melanoma in his life.  They also scheduled him to have an MRI the next day to make sure that there weren't any pigment cells on the brain or spinal cord (this causes neurocutaneous melanocytosis...aka NCM). I learned at that moment just how unexpected life could be. 

We went home from the hospital with several appointments with doctors who had hopefully seen this condition before. We also went home under the impression that Aiden had NCM on his brain so we were terrified for his future. It wasn't until months later that we learned that was incorrect. We also learned that the best way to lessen the risk of cancer was to remove it through plastic surgery. That was so scary to think about while we looked at his precious face everyday but we also knew that we would do whatever was best for him. We had seven appointments within the first month of his life so it was difficult to try to adapt to a normal lifestyle. It was a roller coaster of emotions that never seemed to end. 

We were worried about the cells being cancerous so Aiden has biopsies taken of his giant nevus at his first dermatology appointment. This was a nightmare because they went to three different labs who all said they couldn't determine anything. So we went in for more biopsies. They still came back atypical but the lab determined that they weren't cancerous at this time. It was a great day because it meant that he wouldn't have to go through surgery before six months old.

It wasn't until March, when I met some other nevus families, that I finally began to feel better about Aiden's skin condition. I learned more about his condition than any doctor had ever told me. They even told me about Dr. Bruce Bauer, a pediatric plastic surgeon, who is a expert in nevus removal. The only issue was that he was located in Chicago but I knew that I wasn't going to settle for anything less than his experience. Going to Arizona to meet these families was probably one of my best decisions in my life so I am eternally grateful for them. Dr. Bauer is one of the best doctors I have ever met and his work is unbelievable.

Fast forward to today and I am in a much better place. It's still scary and I am not looking forward to putting him through surgery but I know its the best for Aiden. I have a great support system and I am so blessed to have him in my life. He is the happiest baby and I couldn't ask for anyone better! He lights up my whole world each and every day.

I am eager to start the surgery process in August but I am also looking forward to enjoying the next few weeks before it all starts. Thank you for supporting us and stay tuned for more updates.


Here are some pictures of Aiden's nevus:

This one was taken a few days after birth.

This one is more recent. Much lighter than it was  at first

Feel free to visit www.nevus.org for more information on CMN.