I'm writing these notes to keep everyone informed and get my thoughts down on "paper" so to speak. There will be spelling errors, repeated words and phrases, bad grammer and who knows what else! Just ignore it because it is what it is! Also, this could say one thing and I could have told you another...if there is difference in stories..don't hesitate to ask!
Monday May 16, 2011...the day our lives changed. Avery Kay was diagnosed with Pompe Disease. Pompe disease is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages.
From research we knew there was no cure and the treatment was done by infusion therapy. That was all we knew. We were about to learn lots more!
There were a lot of tears for us on Monday. Just thinking about what little Avery would have to go through literally made us sick.
We did a lot of talking that day to the Genetics department at Children's Hospital, our insurance company and some of Avery's other doctors to get the medical records we needed. They wanted her whole medical history from birth.
Since Avery does have a heart condition and was diagnosed with Pompe..they wanted to see us immediately..our next appointment would be Thursday the 19 of May. We were dreading and looking forward to this appointment. We wanted answers to the millions of questions that were on our minds.
This will be a day we will NEVER forget.
Monday May 16, 2011...the day our lives changed. Avery Kay was diagnosed with Pompe Disease. Pompe disease is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages.
From research we knew there was no cure and the treatment was done by infusion therapy. That was all we knew. We were about to learn lots more!
There were a lot of tears for us on Monday. Just thinking about what little Avery would have to go through literally made us sick.
We did a lot of talking that day to the Genetics department at Children's Hospital, our insurance company and some of Avery's other doctors to get the medical records we needed. They wanted her whole medical history from birth.
Since Avery does have a heart condition and was diagnosed with Pompe..they wanted to see us immediately..our next appointment would be Thursday the 19 of May. We were dreading and looking forward to this appointment. We wanted answers to the millions of questions that were on our minds.
This will be a day we will NEVER forget.
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