Friday, January 11, 2008

Here's the Answer

Here's the answer to the picture I posted Wednesday. For all you people who answered, Chelsea - you are correct. This picture was taken in October - 2002 and was published on the cover of the The Chicago Tribune Magazine(in the insert of the Sunday edition)
Chelsea had a major surgery done in Chicago, in January of 2002. She has a syndrome called Crouzons. The New York Times wanted to do a story on this surgery, so we met a reporter who followed us through this whole surgery and follow-up. There was a 1/2 page story on Chelsea in The New York Times but the reporter (Brenda) knew the editor of The Chicago Tribune
and told here she wanted to do a bigger story on her for The Tribune.

Throughout these next few weeks or so, I plan on posting about my children. I'm starting with Chelsea and this is a major part of her life.
Let me just explain a bit about Crouzons Syndrome. This is a craniofacial syndrome which affects the development of the face. This can be passed down from a parent of just because of a gene mutation. My husband has this syndrome also and his was because of some mutation.
Part of what happens is that the bones in the head close early. You know the soft spot that baby's have - it's important. It allows for the growth of the brain and when it closes early, there has to be a surgery to open it up again. The head tends to grow upward; therefore they have to build the forehead out. When kids are around 10 - the midface does not grow properly, so they have to pull that out through surgery. Chelsea had surgeries when she was 9 months, 15 months and 28 months. These were all for the forehead area. Then when she turned 10 - they did this midface surgery. I'll go into more details in future posts but hopefully this will give you an idea of what this all is about. I'll try to find some pictures to show also. Thankfully, they've come a long way since Dave was a child. If you have any questions you'd like me to cover, feel free to ask and I'll do my best to answer.


13 comments:

Dena said...

She is such a cover girl! She has grown up beautifully and from your blog and her comments - she got the funny gene from y'all too!

can't wait to hear more!

Mari said...

I think it's great that you are blogging about this - it's always good to educate people!

Jennifer said...

I can't imagine you ever get used to seeing your kids rolled back for surgery... it's the most helpless feeling in the world. I'll bet your husband is so happy tht things are easier for them than they were for him. What a blessing western medicine can be!

The picture below is beautiful. Thanks so much for sharing...

Jen

LeslieW. said...

I am so glad to know more about that. I can't wait to see the updates on your blog. That was a beautiful picture.

The Birds Nest said...

I knew it was Chelsea, but I'm not sure if I commented on Wed. What a great pic!! Is that an American Girl?? Did you take her to the store in Chicago? Very interesting story about this syndrome. I love to learn something new every day. I look forward to hearing more about it.

Bonnie said...

This, Terri, is what I love about blogging. The real stuff. Learning about other people. Seeing what real life is made up of ! Life is so full of experiences, different for each of us ! Thank you so much for sharing. I can't wait to read more about Chelsea ... and then about the rest of the children !!

~Just A Thought Ginger said...

Wow, this is so amazing. Your little girl has been through so very much in her short life. I was very curious to know what the photo was all about. We all suffer things in our life, but Chelsea couldn't be blessed with a better family to love her and support her!

Cherdecor said...

Thanks for sharing about the Crouzon Syndrome. I had heard about the syndrome but didn't remember the name.

Your little girl looks so beautiful and perfectly formed to me. She is as cute as a button! I am glad that those surgeries are behind her now.

Mel's World said...

I am so excited to see that you are going to be blogging about this. Information is power and I think the more people know and understand the better. There WILL come a time when I will post about Nick's stuff in more detail, and probably about Diabetes, but I am not ready now...

Nancy said...

I had heard of the syndrome before but not the details, thanks for the education...

Jennifer Partin said...

I am glad that you are sharing her story-----she is fearfully and wonderfully made!

Thank you for educating us all on her condition---I'm sure it has been difficult at times to walk through this.

Your Chelsea must have such grace and courage from the Lord. What a testimony He is building in your family!

Laura said...

I think this is a great idea to tell people about this. I think most people don't know too much about it so this will help a lot of people! I'm excited to read the next post!

Ally said...

Thanks so much for blogging about this Terri. I think it´s great. I had no idea you had gone trhough all of this with her and I have never heard of this before. Thanks for taking the time to educate us ignorant ones...thankyou, thankyou, thankyou. God bless you and your daughter. I am sure you have been through so much that you will probably never be able to write about it all. Like Bonnie said, this is what it is all about. Real life.