Mark and I traveled with Emmie to Emory to meet her neurosurgeon Dr. C on October 17th. Her appointment was in the afternoon, so instead of loading up and staying overnight at Ge & Granddaddy’s house, we were able to arrange childcare (through an awesome babysitter, M, and friend, Kristina) and drive there and back. Emmie did awesome for being in the car that long! She has learned to be a great car rider with all our trips.
Driving down we laughed and chatted and enjoyed spending time together while Emmie slept. But when we got there we both clammed up and tensed up. We honestly had no idea what Dr. C would want to do at this point. We now had a better view of her plexiform than the first MRI. We knew he had seen it in their joint conference and in his office.
Dr. C was very kind and basically told us that this was an opportunity for us to meet should we ever need his services. Because the plexiform is not causing her pain or hindering her development at this time, he did not want to remove it. He showed us where the plexiform is with the MRI images and showed us what part he would remove which would prevent a lot of nerve damage. We discussed the different types of plexiforms. He willingly, and patiently, answered our questions. The gist is, she won’t have to have surgery unless it is causing her problems. The plexiform is attached to the nerve that goes to her right arm. As long as she continues to not have problems with that arm, then surgery is not needed. He also told us that her case was brought up in joint conference (with all the “neuro” people) because the plexiform is rather large and a more “difficult” case. He perfectly agreed with Dr. W’s protocol of following up in six months.
Dr. C said that of all the NF patients that are seen there, he operates on a plexiform about once ever two years or so. He said it’s very seldom that his services are required for NF kids.
I think Mark and I both grew two inches when we left that office. It really felt like a huge weight had been lifted off of me as we left. My baby was going to be okay and no need to worry about surgery right now. We enjoyed the rest of the day with a trip to the farmers’ market and a nice quick meal out before rescuing Kristina!
Thank you to everyone for the prayers! We have felt them so much. We are so blessed to have family and friends who willingly and lovingly are walking this journey with us.
I know I have a way to go before I can fully rest in the Lord. I know He is in control of our precious Emmie but it’s tough letting go and trusting Him it always is.
