Now We Wait.......

Friday was Avery's follow-up appointment at Boston Children's. We got to meet with the orthopedic surgeon who will be treating him from here on out, Dr. G. He answered all of our questions, and explained everything about Avery's condition and treatment options to help us better understand what is going on. He also sent Avery in for a second X-ray since his original was done back in May. This X-ray, unlike the first one, was done with Avery laying down. It showed a much better image of the curve, whereas the original was not as clear because it was hard to hold him still while he was standing. At the time of the original X-ray, Avery's curve measured at 30 degrees. This time it was slightly higher, measuring at 34 degrees. 

Left: Recent X-ray. Right: Original X-ray

So, according to Dr. G, we should expect Avery to be in a cast for at least a year. After that, as long as the curve has decreased and taken well to the cast, he will then be switched over to wearing a brace. The brace will also have to be worn for at least a year, however, the brace is much easier as it can be removed. During the casting treatments, Avery will need to go back every two months to have the cast changed. Each time it is changed he will need to be put under anesthesia. Many people have been asking me about these treatments. I will be writing another post before his appointment that will have more information on this procedure, so I won't be going into too much detail at the moment. After the casting and the brace, Dr. G said that Avery will need to return every 6 months to a year so that they can get new X-rays to make sure the scoliosis has not returned. Otherwise, Dr. G is very confident that this treatment will actually cure the scoliosis, and our little man will have a normal healthy life with a straight spine... Again, I can't say this enough, I could not be happier with Boston Children's and their amazing doctors. 

After the doctor went over everything with us, he introduced us to his scheduling coordinator that we will be working with. She asked us if we wanted to wait until after summer, but we decided to have it done sooner to get it done with. She was originally going to set us up with an appointment on July 24th, but that fell through, so now we are working on getting him in for August 14th. If that works out, he will go in for his pre-op on August 11th. Even though it is a non-invasive procedure, they still treat it as a surgery because it is quite intense. Then on the morning of the 14th, he will go in to have the casting done. Since it is his first time in the cast, Avery will need to stay there overnight to be monitored for any respiratory or cardiac issues. So, this gives Avery at least another 4 weeks to enjoy the summer to the fullest!! 

Last week Avery also had another OT appointment for his feeding therapy. I felt like we got a lot more out of this appointment than the last, which gave me a bit more hope. I spoke with the therapist about his other sensory issues, such as not liking the feel of the sand or grass, and she says that it is all connected. She did, however, also say that after watching him during the appointment she feels he is on the right track. She said that it is going to be a long process, though. What are my thoughts on this?? It can take however long he wants it to take, as long as I know he is on the right track I will be happy!! Since his appointment, I have been working on the latest exercise with him, which is giving him crushed up graham crackers to let him play with and get used to their texture, and hoping that he actually starts eating the crushed crackers... I am very proud to say, he started eating them! This is possibly the most textured food he has ever had to eat without gagging or vomiting. George and I have been so proud of him, and looking forward to the next appointment to see what happens next. Until then, we will just keep practicing with the crackers. 

Eating graham crackers for the first time! :) 

It has been a very stressful time, and this is just the start of it all. I can't thank you enough, family and friends, for all of your support and love. You will never truly know how much it means to me right now.

Like I said in the beginning, I don't know how long this journey will be... but what I do know is that together we make one pretty strong team that can get through anything.