Crazy kooky Family Adventures: Something to do if you are bored

Tuesday, April 15, 2008

Something to do if you are bored

1) Go to the top of this screen
2) Find the words next blog
3) click on those words

-It is really cool to see what happens. It is like "cyber snooping". I have learned that I am quite boring, and I can't do exotic things with 3 kids. (it is more exciting than watching my neighbors)

-Good luck. I hope you don't encounter any nudity, I haven't yet. I still like to believe that most people have some morals in this world.

Have Fun!

2 comments:

Jami said...: Amber,
Wow! It sure stirs up a lot of memories and emotions seeing the pics of Averi in the hospital. How can it seem like just yesterday and feel like so long ago all at the same time?? Thanks for sharing the pics. I have a few scrapbook pages (one of Averi and one of Ren) that I will have to show you sometime.
Thanks again for sharing!!
Jami; Tue Apr 15, 07:09:00 PM 2008
Kjerstin said...: I found you! You crack me up! Call me and give me your email so I can invite you to mine (that makes me sound so stuck up, huh).; Wed Apr 16, 06:14:00 PM 2008

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Osteopetrosis

Osteopetrosis is a rare genetic bone disorder. Averi was born with the malignant infantile recessive gene. James and I both carry the gene and it is passed on through us. Every time we have a child, there is a 25% chance it would have Osteopetrosis. We are very fortunate that Christian and Taylor were born without it. We are not having any more children for fear of this happening to another baby, it was too sad.

Averi was diagnosed at 4 mo. and had to get a bone marrow transplant when she was 5 mo. old. Her older brother Christian was her donor. Taylor also helped out by being very willing and loving. Averi had many, many complications, and she was pretty much on her death bed in the hospital for 6 months.

Osteopetrosis makes the bones very, very hard and it causes a number of problems in the body. Averi is blind because the bones near her optic nerve got too thick and cut the blood supply off to the nerve. She has some vision, but she is still considered blind legally. She is developmentally delayed because she was in a coma for about 5 months during important development milestones. Mentally she is fine, she can count, spell, and play the piano beautifully. Socially she is a little behind, which is also a blind problem. She still eats baby food because she never learned how to eat right and she has many sensory problems. She attends many different therapies to try to help her, and she goes to a regular grade school and has the most wonderful Aide-Renae.

This is just a brief explanation of what Averi had. Here are some links to look at if you want to know more!
http://www.osteopetrosis.org/
http://www.osteopetrosis.co.uk/

Crazy kooky Family Adventures

Tuesday, April 15, 2008

Something to do if you are bored

2 comments:

I love to see the temple

James and Amber Williams

Christian

Taylor Jo

Averi

One of Averi's first Braillings

Blog Archive

Some of our favorite websites

My Blog List

Averi in the hospital

Osteopetrosis

Averri and Renae on Halloweeen.

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