Avleigh's Journey

Let me just start off by saying my Avleigh girl absolutely LOVES school! She comes home happy, she’s sleeping somewhat decent and we are enjoying more of our time together as a family. All of this because our girl is so smart and knows that she’s being included and living a typical life. Looking from the surface things could not get any better! We have a happy Avleigh! On the medical side, things are continuing to get more and more complex. These last few months have been rather hard. I’ve been getting lots of information with little to no answers. Everything is a wait to wait.

Let’s start one thing at a time… a few years ago Avleigh had an accident where her wheelchair flipped and she had some minor injuries to her mouth. These injuries are now resurfacing when I found an abscess in her mouth. Her front teeth are dead and one is getting infected at the roots. We know that her tooth needs to be pulled but we had to be very careful on what type of sedation she receives due to her other medical conditions. We played it very cautious and wanted to make sure she was going to be cleared by her specialists for the procedure. This turned into one referral after the other leading us to a still unscheduled sleep study to identify her apnea. So keep in mind the tooth is still just hanging out and luckily the abscess has somewhat healed on it’s own.

A few months ago I began to notice that Avleigh was bruising very easy. She would also occasionally have blood spots under her skin as if the skin was pinched. One day after retching and vomiting her little face was full of these little red specks. So, the overly cautious mom kicked in. Something just didn’t seem right. We met with HemeOnc and thankfully they always take my concerns very seriously. We began with bloodwork to rule out any underlying issues that could be causing the change. Blood results came back with normal blood cell count but the quality of those cells were very poor. This was very concerning, but there are many factors that could take place: it could have been a “fluke” in the labs or a simple cold could cause those levels to appear off. So we repeated the labs. Second set of lab results came in a few weeks later and the results were indeed the same. We then knew that something is going on with her blood and we needed to find answers. At this point no procedures until she’s cleared by HemeOnc, not even the dental work. Two weeks have passed and today we received the results of those extensive tests. Avleigh has been diagnosed with Von Willebrands disease. We are waiting for formal consults and more appointments to be scheduled with more specialists. The basics of the information I’ve received is it’s a blood disorder that causes the inability to form a blood clot. Unlike other blood disorders, she’s not at risk for skin wounds not clotting but more internal and also her cycle once that starts. As of now, she is not cleared for any procedures and we have a new journey of bloodwork and medicine trials to see which her body reacts best with. Thank god she is a tough little girl and handles bloodwork very well. Looks like this will be a new lifestyle for her to keep her safe.

We are so lucky that I listened to my mommy instinct and put a pause on that tooth extraction. I’m also very happy that I let my guard down that day in HemeOnc office, tears and all, and expressed my concern for the bruising. From what I’ve been told, it’s very hard to diagnose this disease before it becomes a real problem, usually in surgery. Without trusting my gut we could have found this out in a much worse way!