The fall of 2018 kind of rocked our world. We were just coming off the news that Milo suffers from allergies and asthma but we had known about his problem for awhile. After getting the diagnosis and treatment, we were on the right path for relief for him! But that isn’t the diagnosis I am writing about today. Today we are talking about scoliosis.
One day last October I picked Marlee up from school early for an orthodontist appointment. When she got into the van she seemed distracted. After asking her what was on her mind, she told me “Mom, a nurse told me today that I have scoliosis.” I had no idea they even had the screening that day but I told her not to worry, that it may not be bad and was probably slight or precautionary. She mentioned they suggested visiting our family doctor.
After that day, we didn’t think much about it. Erik and I weren’t terribly concerned–figuring if it was anything serious, they would have sent home a note or something. Well, a few weeks later we did get a letter in the mail from Dayton Children’s Hospital suggesting a follow up with our family doctor.
This was around Thanksgiving time so we were busy and distracted. It wasn’t until one night when Erik was practicing volleyball with her that we became concerned. While practicing, Marlee bent over in front of Erik to pick up the ball and he saw her back. He called to me and had me look. The curve in her spine was SO noticeable! How had we missed that?!
Diagnosis
We scheduled an appointment right away with our family doctor. At this visit he examined her and immediately ordered an x-ray and referred us to a specialist. Her scoliosis and long wingspan caused him to have concerns of Marfran Syndrome (learn more about this here) so we were ordered for an EKG as well. It was so scary but thankfully the EKG came back normal!
In the weeks that passed until we met the specialist we just prayed. We were in disbelief that it was happening. Erik and I weren’t sure what this would mean for her future. Thankfully, it wasn’t physically affecting her to this point and wasn’t causing pain.
More Appointments
Earlier this year we had an appointment with an orthopedic specialist. He examined her x-ray we learned her top curve was a 49° and the bottom was 26°. The doctor told us surgery was a very serious possibility and our hearts broke.
Luckily we have a great team surrounding Marlee. Our doctor decided because of her young age and the amount of growth she has left (she turned 12 in April) we would give using a brace a try. The brace should–if it works correctly–keep her curve from worsening.
Bracing
We were referred to Hanger Clinic and got paired with an amazing woman who has been such a blessing and advocate for Marlee! She had her brace custom made and she wears it every night. It is printed with a beautiful tropical sunset and palm trees and Marlee loves it!
We go back this coming June for a follow up and new x-rays. I keep thinking and praying that the brace is holding her curve like it should…so we can avoid surgery.
These last 6 months have been a whirlwind. We have learned so much about a scoliosis…so much more than we ever imagined. Marlee has been so unbelievably strong through this entire process and it gives me peace that it doesn’t cause her any pain.
Choosing Gratefulness
Choosing to be grateful in times like this is a must. We have so much to be thankful for:
Thank the Lord that she isn’t sick. She will live a totally normal life–no mater the course of treatment.
Thank the Lord for the doctors and team surrounding her that care for her as much as we do.
Thank the Lord for the technology of today to provide us with options for treatment.
We have battled with self-blame–how did we not notice this? What if we would have sought treatment right away?–but blaming does no good. We can’t change the past. We are focusing on what is happening right now.
St. Gemma Galgani
In this process God has been amazing. He brought me so many great resources! One of them being St. Gemma Galgani. I learned of her from a podcast I had been listening to. A woman was telling a story of how her daughter had a similar diagnosis and they prayed to St. Gemma hard and by some miracle, her daughter’s curves corrected beyond belief!
We have been praying to St. Gemma regularly asking for her intercession. We may or may not see any correction, but I feel great knowing I have someone in heaven working hand in hand with Jesus, praying for our girl. It gives me strength knowing this.
St. Gemma has brought such peace to our family in this time. And knowing there are so many people out there suffering with the same diagnosis or other back issues, I want to share her with you! Prayer is amazing!
I created these St. Gemma prayer cards as a gift for you. Anyone who is struggling with any kind of back ailments can find peace in praying to this great warrior saint.
Please print and share these printable prayer cards with family and friends. Don’t be afraid to ask others to pray for you. And please comment below so I can pray for you! God has a great plan for all of us…I cannot wait to see what he has in store for our beautiful girl, Marlee. I know she is going to do great things with this experience.
