Category: Avleigh’s Journey
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Progression
Things had been going fairly well for our Avleigh since she had her g-tube placed. She gained two pounds, has more energy and able to sit for a few minutes unassisted. All these things made us feel like we were going strong and reassured us that we had indeed made the right decision in giving…
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Decisions
Life is full of decisions. Our decisions for Avleigh used to be simple. We would do whatever was best for her based on our own opinion, guidance from her specialists and our support team. But what happens when we get to the point where not everyone agrees on the same plan. How do we know…
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Goals
We all have goals for our little ones. For some it’s what they will be when they grow up or what sports they will master. For us it’s quality of life vs quantity of life. This was our main subject at Avleigh’s appointments today. It all started out with the gastrologist. Although her blotted tummy…
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Epilepsy
The first year of Avleigh seeing a neurologist they would always ask about seizures. Our answers were always “no, she doesn’t have them”. Without seeing the signs of the common types of seizures we were certain that she didn’t experience that. Throughout her second year we became more educated on the types of seizures and…
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Avleigh and PCH2D
Avleigh was diagnosed with the rare disease Pontocerebellar Hypoplasia Type 2 at the age of 2 years old. Even more rare is the gene that is affected giving her subtype D. We have yet to find another child still alive with this subtype to help give us an idea of what Avleigh’s future holds. In…
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The Life of Avleigh
We fill Avleigh’s Journey page with beautiful pictures and videos of her good moments and best accomplishments. We are very proud of all those moments as much as she is of herself. What isn’t always explained is these accomplishments aren’t always continual. I spent some time recently looking though old photos and videos. Not sure…
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Bad Luck
Is there a such thing as bad luck? Or even a such thing as luck itself? People often look at their situation and immediately see the things going wrong. I got a flat tire today, my lunch order got mixed up, I could go on and on. But what about what went right? I made…
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Avleigh’s Story
Avleigh is a very smart, confident, determined and beautiful 2 1/2 year old little girl. On her 2nd birthday she was diagnosed with Pontocerebellar Hypoplasia Type 2D. This is a very rare disorder that she will have to battle the rest of her life. It gives her limitations on both motor and communicative skills. This…
Avleigh's Journey 