A Day Trip To St. Louis

We started our trip to St. Louis yesterday morning bright and early, 5am. St. Louis is about a 4 hour trip from Springfield and Darein's appointment was at 9am. We were told we could be as late as about 9:30am but to try and be there no later than that. It started snowing about half way there, we ran into many wrecks and slow moving traffic due to the weather conditions. However, we managed to make it to the Children's Hospital shortly after 9:30am. I had paperwork that the orthopedic office e-mailed to me so that I could have it filled out prior to the appointment. There was approximately 10 pages and took about 3 hours to fill out. We took the paperwork and xrays to the appointment and waited to be called back. The doctor finally came in, looked at the xrays, asked questions and had me tell him about Darein's Antley-Bixler syndrome and what it was. He thinks that her scoliosis isn't your typical idiopathic adolescent scoliosis but instead stems from her syndrome and therefore is a little more difficult of a case. Her curves of 32 and 35 degrees is not enough to warrant surgery at this point. He will not perform surgery until it gets into the 50 degrees margin. Therefore, he has recommended that we brace her. There is a 50/50 chance that the brace will help to straighten her spine or at least keep it from getting worse. If we don't brace her then there is a 100% chance that her curves will get worse as she continues to grow. The brace will not help the top curve at all but we are hopeful that it will help or maintain the middle curve which is the curve that if it got too bad could affect her heart or lungs. The brace has to be worn approximately 20 hours a day and is worn under her clothes and covers the entire upper part of her body. We have agreed to go ahead and proceed with the brace at this time as long as the doctor will watch her very closely as I am still concerned that her scoliosis will grow progressively worse rather quickly. There was a doctor there that strictly works with the braces, measurements, etc. We saw him to get measurements so that they can order the cast to fit Darein. He explained that once the cast is ordered it will take approximately 3 - 4 weeks for the cast to come in and we will return to St. Louis to try the cast on, get it fitted and trimmed a little better and learn more about the brace and our responsibility in getting Darein to wear it the correct amount of time. He stated that she should not start out wearing it to school as she will grow uncomfortable with it at first and will want to take it off and on. Therefore, we will work up to the 20 hours that she will need to wear it. It is more helpful if she wears it when she is up and moving around than if she were to wear it at night sleeping. It is easy to clean as it can be wiped down with alcohol swabs or with soap and water as long as it isn't immersed in water. She cannot swim or bathe in it but otherwise can perform daily activities with no issues. Once she has it she will return to St. Louis again in 2 months for an xray to check the progression of her scoliosis and have the brace readjusted as it may become loose as it forms to her body and extra padding will need to be added. The orthopedic doctor wanted to do a hand xray or what we call a bone age to determine how much more growth she still has left. I assured him that her endocrinologist just did one in February and stated that she has about 2 more inches left to grow. He however wanted another one done for his records there and he said after the xray was done that she has at least a year of growth left. The growth is important as her scoliosis has the potential to get worse as long as she is growing. Once she has stopped growing her scoliosis curves should stabilize and will no longer get worse. As long as her curves are not in the 50's at the 2 month visit then the orthopedic doctor will follow her every 4 months in St. Louis and continue to check her closely. If she is not getting worse then he may extend it to visits every 6 months.
Overall, the visit went well though we are all a little apprehensive as to if this will work or not and if it is worth the expense and discomfort to only get started in the bracing process and find that her curves have significantly gotten worse and surgery will have to be the next step. Yet, we understand that we have to start somewhere and this seems to be the most reasonable place to start. Therefore, we will proceed with cautious optimism.