A little business

Another fun pic of me and my girls from the fall photo shoot!

So glad she finally said Mama! Oh well, I have always know she is crazy about me by this look!

So it has been a whole year! I am AMAZED! To think of the year that we all just went through from the minute she was born and I can't believe how much the Lord has worked to make a very difficult situation go well and while it is not quite what I was picturing for any of us it all is happening according to God's purposes. Well, unfortunately our break is quickly coming to a close. With her birthday and Thanksgiving marking the last two weeks of our time away from focusing on the Nevus. Well the schedule is December 3 is Sophies MRI, she has a preop appt the following week and her next surgery for tissue expander placement is December 15th (the week before Christmas -ugh!)

First I wanted to reveal her stomach and back pics from the first surgery I waited a long time to show you to allow as much healing as possible.

The stomach balloon on the left side was pulled down to her waist.
When he pulled the skin down and across the stomach it formed a pouch of extra skin called a crown that he will eventually use to stretch further and minimize scarring.
The back balloon was pulled down in a t formation and the right side which was blackened is still bright pink like a scar, I don't know if that will ever heal or if he will eventually remove it in future surgeries.

Lets talk MRI: Here is the lowdown which will hopefully clear up a little confusion. People with Giant congenital nevus can sometimes have something called neurocutaneous melanosis (ncm) which basically means the pigmented cells go all the way down into the nervous system which is the brain or spinal cord. Now we are doing the MRI to see if there is any evidence of this. Here are the possible options:

1. No NCM (by the way this is what we are praying for)

2. NCM present that eventually disappears or is nonsymptomatic and never causes problems

3. NCM that causes mild symptoms (seizures, etc.)

4. Severe NCM - possibly fatal

The reason for doing the MRI is if she ever did have a symptom like say a seizure then we would have a baseline which could help determine if there was a problem that was progressing. Thats it, we are doing to help Sophie if she needs it. Obviously there is some concern that something will show up and then I will worry about it nonstop but I did read that if a child with NCM is going to have symptoms they show up in the first year in over 90% of cases so I am feeling a peace with this decision. I am obviously somewhat tired and stressed about the feeling of starting all the surgeries and shots and medications all over again but I want to believe that it will go just as well as last time.

On a very serious note, a few weeks ago my sweet little 16 year old cousin Swan died and my Aunt Susan and Uncle Jed are living my (and every parents) worst nightmare. I have realized that we as parents work tirelessly our whole lives to do everything that we possibly can to keep our children safe and healthy and the bottom line is nothing is in our control. Love, hope and faith, this is what we have. We can love them like crazy, hope for their safety and health and have faith in a God that has our and their best interests at heart. To my Aunt Sue I love you and promise not to take a single moment for granted in honor of your darling Swan. To everyone out there praying for us please pray for my Aunt and Uncle as well when you pray for little Sophie. I will update you about the MRI/surgery as needed. God Bless, Amanda