Category: Avleigh’s Journey
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Food is the Key to her Heart
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…
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Sleep Sweet Sweetheart
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…
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One Thing at a Time: The Tooth Fairy
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…
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As Our World Turns
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…
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School
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…
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It’s Complicated
Avleigh is such a beautiful little girl. Majority of the time she flashes her beautiful smile showing the world how happy she is. It’s hard to imagine the things that are really going on inside her little body. The harsh damage that this disease is doing to her is so hard to comprehend when you…
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Insurance
We pay lots of money on premiums, deductibles and out of pocket expenses for insurance. We, like many, are constantly battling insurance covering certain medical needs. We have been pretty lucky in most instances. They tend to approve most of Avleigh’s medical needs. The things that they decided not to cover we figured out ways…
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Silence
I come to this website frequently and read all my blogs on our journey these past two years. Those years were full of information on Avleigh, PCH and her progression along with regression. I’ve been sitting here on this same draft blog for a few weeks now unsure of how to approach, or better yet…
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Happiness
Happiness is an emotional state of wellbeing and often referred to as the good life. Two years ago when we received Avleigh’s diagnosis that is what we said our goal was… it’s all about her happiness. We have always wanted her to have the absolute best quality of life. All the decisions we’ve made up…
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The Unexpected
We live our days to the fullest, cherishing every memory possible. Avleigh not only has a very rare disease, but she also has rare symptoms and unknown progression of the disease. We have most of these symptoms under control. We know that she has to be vented at least once a day to avoid vomiting.…
Avleigh's Journey 