Avery's Curvy Road

So, it has been a bit of time since my last entry. The last time I checked in was Avery’s birthday. After that, things got pretty crazy around here.  Avery is now four months into wearing his brace...well sort of four months. I would say more like three months, actually. He started in March, but it has not been easy. I don’t want to scare other parents on this journey, but for the love.... this thing is like a torture device. I sure as heck would not want to wear it, so I can only imagine how a three year old must feel. Once he is in it, he’s good to go. But actually getting it on him is more than a struggle. Then there is the hot summer heat to add to the misery. Avery is a heat box no matter what time of year it is, even during the freezing winter months here in New England. He sweats just sitting and watching tv. Add in a thick plastic brace that is not breathable at all, and the undershirt, and you get one sweaty mess of a toddler. So we have to do super short increments o...

“Today you are you, that is truer than true. There is no one alive, who is youer than you.” — Dr. Seuss Since the very second that the nurse held you next to me, and you nuzzled your soft little nose against my cheek, I knew for sure that my life would never be the same. Oh boy, was that feeling ever so true... We just celebrated your third birthday, and I must say, these three years have been quite the journey. An unexpected journey, into a world that I knew nothing about, and still feel that I know nothing about. Luckily, we make a great team, guiding each other along the way.  You have shown me a kind of love and happiness that I never knew existed. The true meaning of unconditional love. If anyone knows about unconditional love, it is families like ours.  You have shown me fears and strength that I never knew I had. People sometimes say to me, “I don’t know how you do it.” Well the answer is simple, it is because of you. You are my baby. You give me my stre...

Today was not one of our best. Avery really struggled during his therapy sessions, and at the end, after everyone had left, he just shut down and tuned out the world. He wasn't tired, he wasn't hungry, he wasn't just being a toddler. He needed to be alone and quiet the chaos in his mind and throughout his body. This has only happened a few other times, at least that I can remember noticing, but he never really isolated himself in this way those times. It was heartbreaking to see him like this. I wanted nothing more than to comfort him, but he wouldn’t even let me talk to him, never mind hug him. He eventually just curled up on the chair, asked for his tablet, and zoned out while watching cartoons.  I felt helpless and didn’t know what to do. I didn’t like seeing him this way. I gave him some space and some time, though, to do his thing. After a few hours or so, he started coming around. He asked me for a snack and wanted me to sit next to him while he watched his ca...

On the first of this month, Avery had his 7th cast removed, and new x-rays were taken of his spine. It was a very exciting day, but my nerves were also going crazy waiting to find out the results.  It was a super fast process, and before I knew it, I was viewing Avery’s new spine images and comparing them to his first one when we started the journey.  What a beautiful sight to see! There is still a slight curve, but Dr. Glotzbecker said that it is at a good place, and...ready for it...he would like to do a two month trial with Avery wearing a brace (yay!!). If the brace can hold his spine where it’s at, then we can be done with the casts. If there is a regression, Avery will have to go back into a cast and then see what happens from there. I was so happy and excited to hear that Avery would not need another cast right now, that I just wanted to hug everyone that was there in the room with us.  After receiving the good news, we were sent to the bracing room...

This is Avery’s last day in cast 7, and I could not be more excited and anxious to get it off of him. Today we are heading to Boston for the cast removal, and at this appointment Avery will be getting new x-rays done to see where his curve is at, or if there is still any curve at all. Depending on how everything looks, he will either have to continue casting or transition to a brace.  Whatever the outcome may be, he will still need at least one more cast. The brace has to be specially made, so to reduce the risk of any regression, he needs to stay in a cast until it is time to change over to the brace. Cast 8 will be done on Monday, so I am also so very excited that we get a cast free weekend to enjoy lots of squishy snuggles, tickles, and bath time.  More updates soon to come once we get the results of the x-ray done today. Please send prayers and lots of positive vibes for some good news! 

In a couple of months, Avery will be aging out of early intervention, which means he will need to start preschool. I can’t believe how fast these few years have gone by. It seems like it was just yesterday that I was anxiously awaiting for my delivery date.  I’m excited for him to start preschool, make new friends, and to come home so proud of himself showing off all the fun stuff he did in class. I have a feeling he is going to be one of those kids who has to tell me all about every second of his day, with so much excitement in his voice.  Of course, I am also sad to have him start school. I’m sad because I’m going to miss our days together when it is just the two of us. I’m so very thankful I have had the opportunity to stay home with him, as we have developed this amazing bond that I pray will last a lifetime. He’s my best friend. My little sidekick. We always have so much fun together.  I am also worried. Worried about how other kids may treat him for bei...

The holidays are done, which means we are all settling back into our routines. I hope you all enjoyed your time, making lasting memories with friends and family. We had a nice quiet Christmas at home, and it was perfect.  It has been awhile since my last post, so let me share with you all the latest news and happenings.  Avery got cast 7 on during the first week of December. He adjusted well in no time, and luckily we have not had any issues with it. It fits perfectly, and there have been no leaking diaper accidents stinking it up. So thankful for that! We don't have anything scheduled yet, but Dr. Glotzbecker said that after this cast is removed, which should be sometime probably late February to early March, we will do new x-rays and see where the curve is at or if there is still even any signs of a curve. Of course we are hoping for no curve, but we will see when the time comes. We have learned throughout this journey that it is best to just not think about it, and l...

I apologize that the blog has been quiet since my last post. Things have been a bit hectic and stressful around here, with lots of changes that we have been trying to settle into. Avery likes routine, and when things change, it doesn’t always work out too well.   At the end of September, Avery got his sixth cast put on. He did an awesome job at the appointment, and adjusted very well. Thankfully we have not run into any issues while in this cast. Dr Glotzbecker said that now with Avery being over the age of two, he can go a little longer in his casts, which is great because that means less exposure to the anesthesia. His next cast change is scheduled for December 3rd, with a cast removal on November 30th. Hopefully I can keep him healthy until then. So far I haven’t had much luck with that, though, as the flu has slowly been making its way around the house multiple times.  Last month, Avery started his ABA services. We had an issue with one therapist in the beginnin...

I admit that before having Avery, I was a kid-free, judgmental, know it-all. I worked in retail and customer service for many years, and I remember so many times watching kids have meltdowns and the parents either not doing anything, or trying to bribe the child with a treat to get them to stop. I would be the first one to say, "No way will I ever allow that". There were many other situations I witnessed where I would just shake my head and wonder why parents can’t get control over their child... Well, fast forward to the present day, and let me tell you... I learned my lesson, and I feel like a total JERK now. And to those people I judged, who did not deserve it but instead probably needed support and maybe a helping hand, I truly apologize from the bottom of my heart.  We have all been that judgmental onlooker, though. I know very well you have done it also. Now, I'm not saying that all of those children were special needs, but what I am saying is what we all...

As some of you may already know, earlier this month, Avery had to go through a two part screening process at Boston Children’s. There was a team of pediatric behavioral specialists that observed him from another room where Avery could not see them, while another specialist performed the assessment with him. Last week, we received the results of their findings.... Avery was diagnosed with autism.... Although I have always had my suspicions, since he was about 9 months or so, it was still difficult to hear those words. Since then, I have been spending any free time I get doing some research, talking with other autism parents, and planning for the next step, which is getting him setup with ABA services. We have shared this news with a few people, but now we feel it is a good time to let the rest of our family and friends know so that everyone is on the same page and has the information they need to better understand and interact with our little warrior. Unfortunately, there is st...

Honesty time... I hate summer and can’t wait for it to end... I want the fall and winter back. At least for now.  As I scroll through social media, jealousy slowly starts creeping in, and it makes me feel sad. I see photo after photo of friends and family relaxing at the beach with their children who are playing in the sand and water. I see them on their family camping trips, at outdoor festivals with ice cream covered faces, the zoo, cookouts and hiking. They are all enjoying these beautiful warm summer days, making memories that will last a lifetime...  I then look up at my child, who is quietly laying on the floor in front of the air conditioner, playing with his train set. He looks pretty content, but then again, this is all he knows. He doesn’t know what he has to miss out on because of his condition. He doesn’t know the dangers of him going out in this kind of heat right now, so staying in doesn’t seem to phase him at all. Many people may comment and say, “Wel...

Thank you everyone for the kind words and well wishes sent for Avery this past week! He had so much fun being cast free last weekend. He got to spend Saturday afternoon with his grandma, and then Sunday we brought him to Newport for a relaxing day by the ocean. He played in the sand a little bit, and he even put his feet in the water! Last summer, on our vacation, he wouldn’t even touch the sand with a finger, and if we brought him anywhere near the water he would scream. So this was a HUGE improvement from a year ago. Proof that early intervention works!!  As many of you already know, Avery had to go in on Monday for cast #5. We were really hoping he would have been done, and transitioning to a brace after the last cast, but it is what it is. The good news is that the casts are working and doing their job. The degree of his curve went from 34 to 18. Unfortunately, we had those long breaks during the winter with flu season, and I feel that those breaks had some part ...

We are down to the final week of cast #4, and I can’t even begin to describe just how happy and relieved we are. I wish I could say that things got better, but they did not. This cast is officially going in the books as being the WORST so far. At this point, I don’t even care if Avery has to continue casting or transition to a brace. The only thing that matters to me is getting him out of the one he is in now. Within these last few weeks the cast caused sores on his hips that were so bad he now cries every time I have to change his diaper. I don’t even want to think about how bad the bruises are underneath on the areas we can’t see, which I think is also causing him to hate diaper changes right now. It just breaks my heart. Thankfully, I met some wonderful parents in the scoliosis group who were so kind and sent us some extra padding and medicated creams to help heal the sores. They have not completely healed, but they definitely look so much better. So, if you are one of those par...