Monday, February 04, 2008

The End of Chelsea's Story

I've finally gotten around to posting about the last of Chelsea's story. She had this last surgery just before she turned 10. The purpose of this surgery was to pull her whole midface forward. Dr. Polley made an incision using the previous scar line but he cut through the bone. This was where the bone would start to heal every day and I would turn the screws to pull it forward more. We had to have this surgery at Rush Presbyterian Hospital in Chicago. She was the 8th person to have this specific surgery. Because this was such a new procedure, there was a lot of interest in it. At the end of this post, I have a copy of the article that was put in The New York Times. We met a wonderful reporter who followed us through with all of our dr. appts. and final surgery. She was also the one who wrote the entire article for The Chicago Tribune. We still meet with her when we go down for yearly visits.

This last surgery took about 6 hours, I believe. She had to stay in the hospital for one week, and got to come home on her 10th birthday. What a great birthday present. We had to go to Chicago on a weekly basis while I was turning the screws.

This is a picture of the halo and the two different screwdrivers that I used to turn the screws. They had specific instructions and markings on them so that I would know exactly how much to turn. This was made of titanium and was very light. Chelsea said it did not hurt when I turned these screws - she didn't even feel it, thankfully. If you enlarge it, you will be able to read more specifics on what I did.

This was 1 week after the surgery She had just come home the day before. If you'll notice,there were wires above her eyebrows and lower that hooked into her teeth. On each end of these wires were little screws - 4 total - I had to turn these once a day. Also, there were 2 screws at the end of the halo. Those also had to be turned every day. This was how we pulled the midface forward slowly. It would open up the incision, very slightly and then it would start to heal over; the next day we would do it again. I quit turning the screws on day #30. Then the halo was just left on for 4 more weeks to let it all heal up.

This was day 17 after surgery. She wasn't feeling 100% yet. She tired quite easily and then she got some sort of bug where she wasn't hungry and didn't want to eat. This gives a better picture of the front of the halo.

This is day 25 after the surgery. The screw above her left eye popped out and so we had to go to Chicago the following Monday, so that they could reattach it in an outpatient surgery.

This is Chelsea and Dr. Polley after the surgery. He was a great surgeon and was so caring toward her.

This is the article that appeared in The New York Times. It gives you a better idea of how she looked before and after the surgery. Enlarge this to read some of what the article said.

There is a possibility of another surgery, if she would want it. That would be to work more on the orthodontics of the mouth. The dr.'s are happy with the outcome of it all, so this would be more of a cosmetic type of surgery. Chelsea is content with everything so I think we're set. We are just very grateful with what all the medical field can do now. I hope I've enlightened you all a little bit with information on Crouzon's and what Chelsea has had done!


Jennifer said...

Wow! The change in the profile pictures is amazing. That had to be a scary time for you as a mom though to see your sweet little girl going through all of that. It must have been hard for her to sleep with that.
Thank you for sharing that all with us.

Laura said...

I think I'm so used to seeing her now that I forget how much she changed. She looks so little in those pictures too. It makes me impressed all over again with what she went through and how brave she was. And also the amazing things they can do now with surgery. I'm glad you shared this!

Just Another Day In Paradise said...

I was thinking the same thing as Laura- she looks so little back then.
It is impressive to see the before and after pictures.

Bonnie said...

Wow Terri. That is amazing. I have seen people with those halo's on and have always wondered if they hurt ! I am amazed that you had the strength to turn those screws every day. (not physical strength) I suppose that is a gift God gives to Mommy's ... the ability to just do what has to be done !

Cherdecor said...

Like Jennifer said, the profile pictures are amazing! She really was a little trouper to go through all of that and so were you to turn the screws. I don't think I could have done that, but then God gives grace to the people involved. I am glad that you shared this!

Anonymous said...

Thank you for sharing Chelsea's story with us. I admire the strength that the two of you have after walking through something like this.

I am also grateful for the benefits of modern medicine and the skilled Dr.'s there are in the U.S.

She is a beautiful girl and sharing your story is an inspiration!

nickernoodle said...

OH! That just looked so painful. Poor girl! She is such a trooper for all she had to go through!!!! Glad everything is fine now and she is a beautiful little girl!

Nancy said...

What a difference, she sure is a brave girl & so are her parents..Medical technology is great..

Sheri said...

WOW! I have to go back adn read the other posts! That is amazing! It must have been really hard for you guys though!!! Especially making the trips and havign to "turn the screws" few....she is a doll though!:) and as an aside looks great too!:)

Anonymous said...

This story is just so very touching. What an amazing daughter you must have. I feel all choked up just reading about it. I am so thankful for the knowledge the Lord has given to the medical fields.

Thanks again for sharing your life and Chelsey's with us.

AutumnFawn said...

Amen to what everyone else has already said!
Thanks to you and Chelsea for sharing your incredible journey. May God use you to encourage others who are faced with similar issues!

Dena said...

Wow! that is amazing - what a girl! I can't imagine having that thing on for so long! the change is remarkable! she was and still is so beautiful!

Ally said...

Yes I truly stand in awe of your longsuffering to walk through all those operations and daily challenges. The changes before and after the halo are amazing. I am so glad that the medical world was able to offer such profitable surgeries for Chelsea and I am glad that the Good Lord gave you all grace to go through it all and come out the other end victorios.
Thanks for your testimony and honesty... I am blessed!