Avery was born on October 8th 2009, weighing 3lbs 2oz. She and her twin sister Addison were 10 weeks early. Avery was my eager one and is the one that decided to come early. They had to force Addison to come out.
Avery would spend 7 weeks in the NICU 60 minutes away from home. The hospital where I delivered did not have a level 3 NICU. At her lowest, Avery was down to 2lbs 15oz. She came home at 5lbs 6oz.
From the beginning Avery has been the one that has always kept us on our toes. She had reflux from the beginning and was on Pepcid. I got used to being puked on from the beginning and boy was it bad. In order to keep her food down and keep her comfortable, she slept in a cradle swing or a vibrating seat. I know now that this could cause issues, but it didn’t in my other daughter, so it wasn’t the root cause of our issues. By 5 months Avery was upgraded to a stronger antacid for her tummy and was doing better.
Due to them being preemies, the hospital suggested a “First Steps Evaluation” at 3 months old (2 weeks old at adjusted age). At the evaluation, she was right on track and they didn’t suspect anything, but wanted to do a follow up 6 weeks later.
That is when it started. At her next evaluation, they noticed that she kept her head titled to one side. She was diagnosed with torticollis. I was given orders for physical therapy as well as home exercises for her neck. I kept noticing that her back was crooked, but everyone assumed this was her adjusting due to her torticollis. Her head became slightly misshapen and we had to see a craniofacial specialist, to look at the possibility of a helmet. This was due to her scoliosis.
She never crawled. But she would do her army crawl and when she would play, she would do what looked like an adorable pose on her side. It was her way of adjusting to her neck and back. We had even started putting a book under her left butt cheek to make her sit up straight in her highchair. That didn’t last long.
We went through 8 months of physical therapy and exercises, but her neck wasn’t getting better and she wasn’t crawling. We were now doing 1 day of physical therapy at our house and then traveling to a therapist 1 day a week. I even had someone suggest cutting the muscles in her neck. We finally had a different physical therapist that suggested we see a specialist for her back.
Avery was 12 months old when our pediatrician referred us to Riley’s hospital in Indianapolis. We had to wait 3 months to get in to see the specialist. This turned out to be the best thing that ever happened to us. We were one of the first patients to see the new specialist. He had just moved here from California and worked with Mehta casting there. The previous specialist did not do casting and we probably would have been given the “wait and see” path.
The first thing he did was shake his head at the idea of cutting her neck muscles and said we were doing everything right with her neck. He then ordered x-rays of her back. She came back with 39 degree curve and 20 degree rotation. Our Dr. made no promises to us, but recommended Mehta casting. He said we were a moderate case and that it should work, but no promises. He also gave us a support website that could offer more explanation and support on casting and that is how I found Heather and ISOP.
We left the hospital with orders for an MRI and a casting date for 2 weeks later.
My Uncle and Aunt went with me and Avery for her MRI. She was 16 months old at this time (13 months adjusted) and weighed 20lbs. She was sedated for the MRI and I was very nervous. I am a pretty strong person and kept it together, but I will never forget the feeling of seeing them take her back.
The MRI came back without any abnormalities, so we were diagnosed with “Idiopathic progressive infantile scoliosis”
The next 2 weeks went by very quickly. January 2011 is when we had our first cast applied. I had not had time to check out the website that was given to me, so I didn’t really know what to expect. Seeing my little sweetheart barely walking (she had just started at 15 months) in a tiny hospital gown, about did me in. She was so brave and didn’t even cry when they took her back.
I went to the waiting area in tears, but walked by a few other mothers sobbing and felt blessed. They had larger groups with them and had their children there for more serious surgeries. One woman my age was even laying on the floor with her head in her mother’s lap, just sobbing. Every time I walk into a children’s hospital, I am reminded of how bad it could be. I know now that scoliosis is nothing to laugh at, but we were in God’s hands and I just knew we were going to be okay.
That wasn’t how I felt when we got home that evening….. Avery came out of surgery fine and she was down to 20 degree curve in cast and 0 rotation. She would wear this cast for 12 weeks. However; she couldn’t sit up, couldn’t walk and couldn’t roll over. My husband and mother-in-law were at the house and they were in tears. Avery just sobbed, because she had lost her independence. My husband ordered me to take her back and have it removed. I stayed strong and found some pictures of scoliosis surgery incisions to show him that we made the right decision. I also logged on to this support website for the first time. Boy did I need reassurance. That was the worst night we have ever experienced.
Avery slept between my husband and I on a pillow for 2 weeks, until she was able to roll over on her own again. It took just about 2 weeks for her to re-learn everything and then watch out J. She is still my little trooper. I grew to be amazed at how strong she became physically and mentally. She has some of the strongest legs I have ever seen. She could go from sitting to standing without holding on to anything or touching the floor with her hands.
Within 3 months of being in cast, her torticollis had resolved itself. Simply amazing!
Casting also gave us other trials. No baths in the bath tub. Very hard to explain when her twin sister was in the bath tub. No swimming. Avery didn’t swim until she was 3 years old, but neither did her sister. We had a few ignorant people to deal with, but for the most part a lot of understanding. She once wasn’t allowed on a carnival ride, even though I explained what her cast was. So, I simply put her shirt back on and got her on the ride. No playing outside on hot days.
All of these sacrifices were totally worth it. They can enjoy these things when they are a little older, but we only have a small window to cure their scoliosis.
Avery also gained 2 inches in height in cast. The cast weighed approximately 3lbs. She is still 2-3 inches taller than her twin sister.
Avery would go through a total of 5 casts. We got down to 10 degrees in the last 2 casts, this was without the cast on, so the Dr. decided to brace.
Avery’s brace was molded from her last cast and she wore this for 3 months, 23 hours a day. At her 3 month check up, she was still holding in her brace, so we were told to come back in 6 months. We actually gained correction in that 6 months, 9 degree curve and 0 rotation, so we have now been brace free and cast free for 6 months. We go back on June 2014 for our next check up.
Avery is a super sweet and smart little girl. She is so strong and faces everyone with courage. She is my talker and confident one. She is also pretty comfortable around strangers, since she has been around so many. She takes things very personal and is a perfectionist, even at age 4. She is hard on herself and cannot stand to be wrong, or to do wrong.
What I have learned through this whole process is to trust your instincts as a parent. There are many people that I have met that have made comments such as “my daughter has scoliosis that they caught in gym and she is fine” Or, “I hate that she has to wear that cast, isn’t there anything else that you can do?”. I had a lot of support and also a lot of people that I felt did not understand my decisions.
The casing process is so new that people want to assume that you aren’t doing what is best.
I can speak from experience that casting works. I am so very lucky that Avery was under the age of 2 when we finally met with our specialist. Her adjusted age made it even better since she was really only 13 months at the time of casting.