Crazy kooky Family Adventures: Hugs Sand Kisses!

Sunday, June 7, 2009

Hugs Sand Kisses!

Great weekend with the kids. We have had a lazy, rainy weekend. James is so great! He decided to build the kids a sandbox for the back yard. He is so crafty and handy. He did an awesome job. I took some cute pictures of the kids watching him, it was crackin' me up! I will post the finished product when we are all done!

2 comments:

Kam said...: They're so cute with their new puppies! Jealous of the sandbox... I want to get one for the kids, but it needs a cover because of all the cats around our neighborhood. Maybe next summer...; Tue Jun 09, 08:53:00 AM 2009
Karli said...: your kids are soo cute!! i love them!; Thu Jun 18, 07:32:00 PM 2009

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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

Sunday, June 7, 2009

Hugs Sand Kisses!

2 comments:

I love to see the temple

James and Amber Williams

Christian

Taylor Jo

Averi

One of Averi's first Braillings

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Averi in the hospital

Osteopetrosis

Averri and Renae on Halloweeen.

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