Crazy kooky Family Adventures: Adorable!

Monday, February 2, 2009

Adorable!

Here are the cutest hats my mom made my girls-in one night! I could only get Taylor to pose! They are so cute, and my mom is soooo talented! Thanks mom! We love you!

6 comments:

The WIlloughby Family said...: So cute...I helped pick out the button...talent huh!; Mon Feb 02, 07:37:00 PM 2009
LeAnn said...: Love the hat. I need to ask your mother for the instructions for the hats. Taylor Jo looks way cute; give her a hug from Grandma W.; Wed Feb 04, 10:26:00 AM 2009
Pamcakes said...: I am sorry to laugh at your pain but that story is funny. I wish you caught the ski lift of fury on tape. Very cute hats!!! I would like to order one for Maycee.; Wed Feb 04, 01:48:00 PM 2009
Anonymous said...: Sorry about your black eye! Looks like it hurt bad. Cute hats, reminds me of flappers, in the roaring 20's. Cause I was alive then and all! Thanks, for reminding me of my frozen bunnies. That was so sad! I did take better care of Coco, thankgoodness!!!; Thu Feb 05, 09:33:00 AM 2009
Anonymous said...: So cute! That's a talent:) LOVE IT!!; Thu Feb 05, 11:28:00 AM 2009
Kam said...: Awesome hats!! I didn't know your mom crochets. That's such a great talent.

hey, sorry I didn't call while I was visiting my parents... I didn't really even leave their house, not even a trip to Wal-mart, if you can imagine. Oh, except for the Wapello school carnival... you missed out there, I'm tellin' ya! Will try to call soon, promise.; Thu Feb 12, 12:15:00 AM 2009

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

Monday, February 2, 2009

Adorable!

6 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.

.

Total Pageviews

Feedjit