Avery Kay: Riding her bike

Friday, March 15, 2013

Riding her bike

Miss Avery riding her bike. She could not do this last summer. She is getting so strong and can now push the pedals on her own!!

5 comments:

FerchieMarch 22, 2013 at 5:41 AM
Dear Shannon, my 9 mo old Son was recently diagnosed with Pompey (infusion #3 yesterday). Your beautiful Avery Kay brings so much hope, joy and strength to my family. I'm so glad I found your blog. Thank you for sharing your life with us. You are an inspiration. Sincerely, Ferchie
ReplyDelete
Replies
ShannonMarch 22, 2013 at 12:30 PM
So glad you found my blog too. Are you on Facebook? There is a big community on there too. You can suggest me as a friend. Shannon Meyer, Holly Michigan. shannmeyer@hotmail.com
Keep checking back.
What is your sons name. Where do you live?
ReplyDelete
Replies
FerchieMarch 22, 2013 at 1:54 PM
His name is Matteo. We are in Laguna Niguel, Southern California. We'll look you up in Facebook!
ReplyDelete
Replies

Add comment

The day that would forever change our lives.

5-16-11

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.

Avery Kay

Ballerina Avery

Friday, March 15, 2013

Riding her bike

5 comments:

Total Pageviews