Sunday, January 30, 2011
No, not to China this time, but to Chicago! I wish I could say it was for vacation, but it's for Sophie to have surgery. For those of you who do not know, Sophie was born with congenital giant nevus(CGN). It starts on her lowerback and covers her whole bottom and wraps around her legs. She also has smaller nevi, or satellites, on various parts of her body. We are traveling to Chicago to begin the process of having Sophie's CGN removed by a pediatric plastic surgeon, Dr. B, who specializes in nevus removal.
There are different options available for nevus removal. Sophie is having hers removed through tissue expansion and nevus excision, which are two different surgeries. Basically, in the first surgery, which we are having on Friday, tissue expanders are placed under the "good", i.e. nevus free skin. Over the next 11 to 12 weeks, we will gradually fill and expand the tissue expanders, and thus Sophie's skin. After the expanders are completely filled and expanded, Sophie will have the second surgery to remove part of her nevus, and then the expanded skin will be pulled down and reattached where the nevus was removed. We will go through this two surgery process 3 times. I know this sounds like a lot for a little one to have to go through, and it is, but we have a great support system in our friends, family, and church, as well as other nevus families who are going through, or have been through, the same thing.
You may wonder why I am sharing something so private with everyone who may read this blog. My goal is two-fold: (1)to make people more aware of CGN, as I'm sure most of you have probably never heard of it since it only occurs in approximately one of every 500,000 births and (2) to document this new journey for Sophie, as I'm thankful she will probably not remember very much, if any, of this. You may also be wondering if Sophie is having any problems because of her nevus. The answer is no, and we love her and think that she is perfect just the way she is, but we know that as she gets older the potential exists for there to be psychological and social challenges for her if we choose not to have her CGN removed.
So follow along with us on this new leg of our journey, if you will. We ask that you pray for Sophie, specifically that her pain will be manageable and that there will be no complications. Pray for Bo and myself as we anxiously anticipate what lies ahead. Pray also for the surgeon and all of the healthcare providers who will be working with Sophie and that we all have safe travels.
I plan to update the blog from Chicago, so stay tuned!
Monday, January 24, 2011
Sunday, January 16, 2011
Christmas Day started out very early. Not because Sophie was so excited about Santa Claus coming to our house, but because Mama and Baba were so excited to finally be celebrating this day with Sophie! Sophie's Nana, Pawpaw, aunts, uncle, and cousins were very excited about Sophie's first Christmas too! So much that they all wanted to be here when Sophie got up to see what Santa had brought her. Sophie didn't quite get the whole Santa bringing toys thing, but she really liked the fact that he did!
After breakfast, we went to my parents' house for lunch with my mom's side of the family. Sophie was so excited she would not even think about eating lunch, or breakfast for that matter. She just wanted to play! My mom's sisters and their families were so sweet to buy her gifts. She received a new doll from Aunt Bot and Uncle Mac,
and some new Melissa & Doug puzzles from Aunt Taffy. She has loved playing with them all.
Aside from all of the toys, Sophie's most favorite thing to do was play with Lily, who is Emily and Amy's King Charles spaniel. Sophie used to be afraid of her, but now, she wants Lily in her lap all of the time. I know Lily think she has died and gone to the bad place every time she sees Sophie!
On Christmas night, we had our time with my immediate family. We had a very light dinner and then dove back in to the present opening for the final time. Sophie had a great time helping everyone open their gifts. She would run from one person to the next, assisting them in ripping the bow and wrapping paper from their gifts, after which she would yell, "Wow!". It was so much fun to watch her reaction to all that was going on.
To think of what her life was like a year ago and what it is like now is baffling. So much has changed in her life in 9 months, and she has dealt with it all very well. We are all so blessed to have her in our lives, and we are so thankful that God entrusted her to our care. We know without a shadow of a doubt that she is the child that He always entended for us to have.
We love you so much, Sophie!
Saturday, January 01, 2011
After the service and a quick bite of dinner, Sophie and I began to prepare to bake cookies for Santa. Sophie had never helped me bake anything before, and I had been looking forward to this night for so many years, so this was a real treat for both of us! Earlier in the year, I bought us matching just for this occasion, so we donned them and began baking our cookies!
Mixing up the dough
My dad's brothers, sisters, and their families, were so sweet to bring Sophie gifts. She had a great time ripping the bows and paper from the packages, and she quickly learned how to dig through the tissue paper in the gift bags to find what was hiding inside.
This bow won't come off!
As you probably gathered from the pictures, Sophie is still a little hesitant with new stuffed animals. She was VERY uncomfortable with them when we first met her and for a few months after we got home. We have found that if we leave them out where she can see them and warm up to them at her own pace she will be playing with them in no time. This was the case with the monkey that she has named "Monk". It took a day or so, but she she is having a great time playing with him. Sophie loves to take him by his long arms or legs and swing him. She thinks it's hilarious!
Before we starting opening gifts, we managed to get the kids to sit for a few quick photos. It looked like we had a strobe light in the room with three cameras flashing!
Jessica was so sweet to help Sophie open her gift of Elmo dvds
We really had a great time with everyone and hope that we can get together again very soon!
Thank you Michael, Jessica, and Merrill for having us!