Happy National Scoliosis Awareness Month!

For those of you who did not know this... the month of June is Scoliosis Awareness Month!! Make sure to wear green to show your support for all of our scoliosis superheroes! Last month marked one year since Avery was diagnosed with infantile scoliosis. It has been quite a journey, so far. A bumpy journey at times, but we always manage to pull through. This first year has taught me a lot about myself as a mother, and it has taught me a lot about my son, his personality, his weaknesses, and his strengths. We have developed a bond like no other that I know of, and it is a bond that I hope will last all of our lifetime together. He is my best friend, my sidekick, my hero...my little warrior. 

We are now in the fourth week of cast 4. This cast has not been fun at all...not that the other three were, but this one especially has been the worst. It's tight on his hips and waist, mostly at night after he's been eating and drinking all day because his belly is all bloated, which makes sleeping very difficult for him. I have tried smaller meals, gas drops, extra padding in his crib...nothing seems to help. We did notice before leaving the hospital that the cast was tighter than the others, but they said it was supposed to be like that so that it doesn't shift when he moves or gets picked up. They trimmed it a little off of his hips, which helped somewhat, but I still feel it's too tight, and I'm not sure if he will last another four weeks in this thing. Here's to hoping for the best....

Avery's next appointment at BCH is scheduled for June 22nd. He will have his cast removed and then we finally get to see his one year x-ray. I am trying my best not to think about it, but I have so many thoughts and emotions running through me right now. I'm anxious, scared, excited...I want to cry and celebrate all at the same time even though we haven't heard the results yet. Dr. Glotzbecker said that once he sees the new x-ray, he will decide if Avery will continue casting or transition to a brace. Of course we are hoping for the brace, but until we get the news from his doctor, we are preparing for these fast approaching hot summer days as if he will be in a cast for a little while longer. That means no beaches, no pools, no sprinklers, and only going out to play in the morning or the evening when the sun isn't so hot. Although other parents advised me not to, we do still let him dig around in his sandbox a bit. We just have to keep a close watch on him to make sure he's not getting any of the sand down his cast. Our summer plans may be different from other families, but we still find fun activities that both of our children can enjoy, and that don't involve being out in the sun for long periods of time. I would rather sacrifice one summer than put my child's health and life at risk. 

As for speech therapy, unfortunately, there hasn't been much progress, and Avery is still basically considered nonverbal. He does say "bye", and he sure does love the word "no", but other than that, there isn't any connection happening during the therapy sessions and the exercises she gives us to work on with him. We understand that this takes time, and yes we know that children talk when they are ready, but when we say that there hasn’t been much progress we mean there really has not been any progress at all. Not even close. 

At his last session, his speech therapist brought up some concerns that she has. They all happened to be the same concerns I have had for the past year. I had never mentioned them to her before, because everyone else has told me not to worry about it, so I have just tried not to pay too much attention to any of it. Well after speaking with her, she told me that she would like Avery to have an autism spectrum disorders evaluation. She had me take an online assessment for him, and we will go over the results at his session this afternoon, and she will also bring a list of places to call to set up the evaluation. She said if there is a diagnosis for him, whatever it may be, it will be best to have it taken care of as early as possible to get him started with the right kind of assistance he will need for when he goes to school, since we are hoping to get him into a preschool program next year when he turns three. 

More appointments. More evaluations. More doctors. Our little man definitely keeps me busy, that's for sure. I wouldn't have him any other way, though...

As always, thank you all so much for your love and support. I hope that you will all join me this month in raising awareness about scoliosis. Before Avery was diagnosed, I was like many others who just thought of scoliosis being a crooked spine. I honestly did not know that an infant could have it, or that it could be life threatening no matter what age the person is. I did not know about all of the symptoms or signs to look for, the treatments that are available, or about the amazing science and technology behind a lot of these treatments such as casting. When I talk to others, in depth, about Avery's casts, people are amazed at how much is involved in the procedure. So, please, if you could, show your support this month and #GoGreenForScoliosis!!