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!
5 comments:
Becky, I am praying and praying. Please keep us posted on how she does. Do you have Shawna Weekley's email? Her Adrian is going through the same process for his large facial nevus. She would be able to give you some words of wisdom, I'm sure. Love ya!
Becky, I will be saying prayers for all of you this week. I am so glad that we finally have our sweet girls home with us... this time last year we were all waiting... yuck. Sophie is just beautiful and I know that she is going to do great. :)
Ashley Fairley
From a mommy whose been in your shoes, I am sending hugs and prayers and lots of love your way. You couldn't be in better hands with Dr. B, Susan, Mim and Wendy. They are truly amazing :) My Sophie be held in the good Lord's hands every step of the way and may you all be witnesses to an amazing miracle of protection and healing in your darling daughter!
God Bless
Beth
www.newsfromthenagels.blogspot.com
(mom to Sully, 18 months-GCN 70% removed by Dr. B, 2 rounds of tissue expansion complete)
Becky, I am a very good friend of Rhonda Gibbs and have been following your blog, and I will be praying for yall during this time, God will take you every step of the way. Sophie is just precious.
Lee Ann Evans
I hope you were able to get to Chicago today. We are praying for all 3 of you.
Post a Comment