Welcome!

This is my first time ever creating a blog. I have kept numerous journals since I was a little girl, but never anything like this that would be read by others. So please bare with me as I try to figure out the world of blogging. There are a few reasons why I decided to make this journal here...

1. I am writing this mostly for my son, Avery. As he grows older, I want him to see this and all he's been through to be reminded of how strong and how much of a little warrior he really is. On days when he has doubts about himself and his abilities, I want him to be reminded that he can overcome any obstacle or struggle that God has thrown his way.
2. To keep family and friends updated on Avery's conditions*, treatments, and progress. I figure this will be much easier to keep everyone posted on what is going on. 
3. And last, to have a place to just let it all out, especially on the really hard days. All of our hopes, joys, fears, frustrations, and struggles. We don't know how long of a journey this will be, but we do know that it won't always be easy and there will be bumps along the way.

Avery, age 1

This is our son, Avery. He is now 14 months old. When Avery was around 7 months, I noticed during his bath time that something did not look right with his back. As he was reaching forward to grab his toys, it looked as though he had a hump on his left side. At first I thought maybe it was just me being a crazy paranoid first time mom, so I just let it be. However, I started to notice it more each day. Later on I pointed it out to George and my mother, and they both said that they had noticed it too. I just couldn't get it off of my mind this time, so I went on to a parenting community message board to see if anyone else had any experience with this. I wasn't able to find much, except some parents saying that it is natural for infants to have a C-curved spine due to their position in the womb, and that it should straighten out once they begin sitting and standing unsupported. That explanation at the time seemed to make sense. Avery has always been a bit behind on his development, and wasn't quite at that stage yet, so I tried not to think much of it but still kept a close eye on him. As time passed, and we reached his one year well visit, the curve had not gotten any better. I pointed it out to his pediatrician. When she examined him, she looked quite surprised. She looked at it a little more, and then stated that the curve was very rare and that she would be referring us to Shriner's Children's Hospital. The referral paper said for "possible scoliosis". How could that be when he is only a year old??

Until now, whenever I would think of scoliosis, I would be reminded of those embarrassing scoliosis screenings that we had to do during gym class in middle school. I'm sure you all know what I'm talking about! Or hearing my mom try to scare me by saying that my back would grow crooked if I slouched too much. I always just assumed that there was only one type of scoliosis and that was the only way you could get it. I was wrong.

Avery's scoliosis x-ray 5/9/17

So Avery was seen at Shriner's in May. They did his x-rays, and made the official diagnosis. Infantile Scoliosis. This is a rare form of scoliosis that develops in children under the age of 2. A curve with a degree of 30 or higher tends to worsen without treatment. If it is not treated early, or properly, it can be life threatening. Avery's curve at the time of the x-ray measured at exactly 30 degrees. Treatments are usually started around 25 degrees. Since this form of scoliosis is so rare, there are still a lot of doctors and hospitals that are not familiar with it. The Shriner's we were referred to happens to be one of those places. They wanted us to wait and see how his curve would measure at 18 months before even considering any form of treatment. I was not happy with this. It is a wonderful hospital, but with our situation, we needed someplace better and with more experience. 

I once saw a photo online that said "A worried mother does better research than the FBI." That saying could not be more true. Prior to our Shriner's visit, I began, again, with researching the heck out of scoliosis in babies and trying to find as much information as I could. This time during my search I came across a Facebook group that was created for parents of children with this condition. I spoke to quite a few of the parents in the group and got as much advice and information from them as I could. Later that night, after our appointment at Shriner's, I decided that a second opinion was needed. I knew that Avery should be treated as soon as possible before the curve gets worse. Boston Children's Hospital is one of the top hospitals in the country, and their orthopedic department was highly recommended by many of the parents in the scoliosis group. I immediately requested an appointment online, and was lucky to get in the very next week. So, to Boston we went.

Despite the long drive, I could not have been happier with the staff at Boston Children's Hospital, and Dr. H. They examined Avery, reviewed the x-rays, and confirmed the diagnosis. Then Dr. H set us up with an appointment for an MRI to make sure that there are no underlying issues that could be causing the scoliosis. After the MRI, we meet with Dr. H and Dr. G, who specializes in early onset scoliosis, to discuss the MRI results and set up a treatment plan for Avery. As long as the MRI results come back clear, Avery will be able to start the casting treatments**. However, if they find something on the MRI, there may be a chance he will need surgery.  

...And so the journey begins...Welcome along on "Avery's Curvy Road." 

Tomorrow is the MRI appointment. Not only are we worried about the results, but it will also be Avery's first time having a procedure done under anesthesia. Scared, nervous, anxious, stressed. Where do I even begin to describe how I am feeling or the thoughts running through my mind??

Side notes:

*Avery also has feeding issues. He has not officially been diagnosed with any disorders as of yet, but he has started seeing an Occupational Therapist once a week to work on getting him to eat solid foods. These issues could be related to the scoliosis, or it could be something entirely different. It is a slow process, but we just try to take it one day at a time and pray for the best. 

**For those of you not familiar with the casting treatments...

Traditional scoliosis surgery can significantly limit a child's growth and have lifelong effects on lung function. Using the casting method for treatment can control the progression of scoliosis in younger children while allowing their spine and chest to continue growing and their lungs to develop normally. A lightweight plaster cast is used to guide the spine out of its curve during the years when children grow most rapidly. The goal of this non-invasive treatment in children under the age of 2 is to cure the scoliosis, and to avoid surgery. The casts are to be changed, under anesthesia, every 2-3 months with the goal of achieving a straight spine. The number of casts needed will be determined as the curve is measured throughout the process by the child's doctor.