Avleigh's Journey

It’s been a while since I’ve written here. It’s not because things have been all peachy or because all of Avleigh’s medical complications have minimized. It has been because I have been choosing to take some time for us and to focus publicly on her happiness. The last few months she has been an extremely…

Avleigh’s tonsillectomy was much smoother than we could have imagined. She did amazing through the surgery, even with her blood disease, and made us feel like we worried over all these little things for nothing. She tolerated this surgery better than any other. She was content, actually even prefers to rest on her own than…

I’ve broken the news about our possible miracle with the stem cell treatment, but what happens if we decide it’s not the bet plan of action? Or what if we go through with it and it doesn’t work? We are continuing to work through her follow-ups and communication with her medical team as if the…

I can remember the day we received Avleigh’s diagnosis like it was yesterday. One statement that was made stuck with me… “I’m sorry for your loss”. In other words they were telling us there was nothing they can do for her. There are no cures and no treatments. Just a matter of managing symptoms. I…

Avleigh has always been that child that truly enjoyed food. When she would eat you could see the love in her eyes and she would smack her lips with pure satisfaction. It has been over a year since she has been able to have food by mouth. By this time it was thought that she…

Avleigh has always struggled with her sleep from the time she was born. Imagine those first few week that you bring home your newborn… we’ve had this for the past 4 years! We’ve done all we can while keeping her safe to try to promote good sleep hygiene. We recently repeated a sleep study that…

First and foremost Avleigh is doing wonderful! A year ago I honestly wasn’t sure how long she would have with us. She is now happier than ever! Nether-less she also has been having a lot going on medically. Over the last few months I have been doing a lot of research in learning new diagnosis…

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 first day of school is soon approaching. The first days of school are typically full with joy, excitement and feelings of pride in how much your little one has developed in his/her first few years in life. It’s a new milestone. A milestone that parents harp on and make really big deals about. We…