13 years ago, while pregnant with Carson, I was placed on bedrest and ended up sitting out of midwifery school at Emory for a couple of semesters until I could return after the birth. When I returned, I had to join a different group of women and be part of their graduating class. I was nervous...never been too good with change...but this week one of those dear friends helped alleviate the worry of the kids missing out on trick-or-treating. She so graciously opened up her home and added two more pieces of chaos to her sweet family while we attended Effie's neurosurgeon appointment and MRI. Everyone got to trick-or-treat and had a blast. I was discouraged all those years ago, and so very worried about joining a new group...I didn't know, but He knew.
Right after I found out about Effie's scoliosis, the very next morning just after 8am, I was calling to get her in to a pediatric orthopedic physician as soon as possible. First hospital system I called was one that had been recommended...big system. The lady that answered the phone was nice, but seemed preoccupied and even after, through a cracking voice, my telling her about our new scoliosis adventure, she couldn't remember what we were coming for just a couple of minutes later. I know that sounds trivial, but I needed it to matter to her because it very much mattered to me at that moment. She went on to have issues getting our insurance information added and it took a while to get an appointment...it would be a couple of weeks. I made the appointment, but that wouldn't work for me, because, you see...I have zero patience and knew I wanted an appointment for Effie sooner than two weeks. I called the next group, and this lady was so sweet and seemed more concerned in helping me get in as soon as possible. She could get us in with a doctor the following Tuesday...yes, that's only five days away! I scheduled it, then poured over the physician's background...he was young...did he have enough experience? I was so nervous about us picking the "right one". We saw him on the 17th and he spent so much time with us and was concerned when he entered our room. He has since had to tell me Effie's MRI was abnormal and listen to Effie cry in the background and listen to me try to keep it together when he told me she would need surgery urgently. He has texted me to make sure we made it home, and is making room on his schedule to be in the operating room during her surgery. When I made the appointment, I didn't know if I picked the right physician...but He knew.
Things that we fail to understand, He understands and He already knows. I have to believe that God has a plan for all of this and there is purpose in it.
So many people are asking questions, and I am so appreciative of every text, every message, and the questions certainly do not bother me, but I found a website that details what we have going on right now. For now, we will have surgery for the Chiari and the syrinx, then watch and address the scoliosis after her recovery. This probably contributed to, if not the complete cause of the scoliosis, but repairing the Chiari is most important right now. So happy to report the brain MRI didn't reveal any hydrocephalus and just confirmed what we already knew otherwise.
Conquerchiari.org - - Go to "Overview" under "What is Chiari Malformation?" It is a great explanation. She has a Chiari Malformation type 1 with the presence of a very large syrinx. The doctors and nurse practitioner seem amazed that Effie isn't symptomatic at all. For that we are so very thankful, as many of the symptoms that appear due to spinal cord compression can last forever. They are trying to get to the repair before she is symptomatic. We are also so very thankful for a pediatrician that I love so much, that even though she didn't have to, took the time to run her fingers down Cullen and Effie's spine simply because they wanted to be like their big brother. She could have very easily reminded them it wasn't time for their screening and not do it, but she did. She is a woman of God, and she may not have thought twice about it that day, but again, I bet He knew.
I think we are all better now that we have a plan...it's been three weeks to the day since we had that initial diagnosis of scoliosis...now just over a week after Chiari diagnosis, we will turn this girl over to a team of doctors and pray fiercely for steady hands.
Effie always has the sweetest faith and questions or statements about God...tonight almost home, she asked me...
Effie: "Mama, you know what would be really cool?"
Me: "What sweetie?"
Effie: "If during surgery, I could go up to Heaven, look around and then come back"
Me (fighting back tears): "Effie, I'd rather you not"
Effie: "But just go and then come back"
I. can't. even. What do you say to that? How do you respond? I could barely speak, so I just squeezed her hand.
Brain surgery...who ever thinks this is where they'll be. She is scheduled for November 6th. It's soon. Please join us in constant prayer for the physicians, nurses, anesthesia, for Effie, for Carson and Cullen because they are worried too, for me and for Matt. God knew what a special girl He created...I know she has such a purpose in this life... I can't wait to watch her recover from this and continue her walk of faith in this world. I don't know what the purpose of all of this is, but I bet He does.