Well, we met with the CT surgeon at CCH and let me just say that he EXCEEDED ALL of our expectations! He answered more questions than all of her previous drs combined - well almost. He really seemed to care about Sydney which is such a blessing, so many times drs have started to discuss things right in front of her with no regard as to how it might make her feel.
So on to the visit. He said if the NF1 were not in the picture he WOULD recommend repairing her chest. Not only to help with the scoliosis but to give her heart and lung more room. But of course NF1 IS in the picture and the tumor is very large and involved. So he plans to discuss surgery with all of the other members of the NF team. It may or may not happen. So we still don't have an answer but we do have a dr that we TRUST and that is SO important. I don't know when this meeting will take place. In the meantime Sydney has been scheduled for her next MRI. That will be January 21st.
Thanks again for all of your prayers - please keep them coming.
Blessings,
Sandy
November 14, 2008
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14 comments:
Aww, I think that is so awesome that you found a DR that is not only caring of your and Chad's feelings but Sydney's as well!!!
Please keep us updated! I will continue praying for Miss Sydney and that you receive the answers that we all hope for once they have the meeting!
Wonderful Wonderful! Finding a doc that you trust is so so important! I will keep checking for updates! Happy Holidays!
kathy
God Bless your family and hold you in His care.
Is the chest issue pectus excavatum? I was wondering because my son has it. He is 2.5 and some day we will likely have to get it fixed. My husband also had it and had his repaired when he was 5 (in the 80s) but the way they used to do it really made his spine curve. I will keep praying for Sydney, and am so glad you liked this doctor! Thanks, Kelly
I am so glad your visit was so good with the Dr. ( God works on both ends) i know this means a lot to have caring people to deal with, i keep you and your family on my heart and in prayer. May God hold you in the palm of His hand and get you and Sydney through this is my prayer.Know that many are praying for you all.
Just wanted to let you know that all of the nurses often ask about you and Sydney!
Many says to send "Well Wishes" your way.
It is good to hear that you have found a doctor that is caring and worthy of your trust. Sydney and your family are in our thoughts and prayers.
Sydney is such a beautiful little girl and looks so happy!
Mary
you all are in our prayers today and always. We are believing that good things are coming your way!!!
(((HUGS))) from Illinois,
Michelle
I am so glad that you have a doctor that you trust. That is so very important...
Know that i keep you and your family in my prayers. Please keep us updated!
Many hugs....
Hey,
I was wondering if you would mind if I put that sweet little picture of your Sydney on my blog sidebar? I think it would link people to your blog and maybe more people would join in praying for her healing?? She is just precious. I am thankful that the doctor believes that there are things they can't fix - but only God can! Yippee Jesus! He is the miracle working, Jehovah Rapha! He is faithful! We will continue to pray...and let me know about the little picture of your sweet baby girl...
Wonderful that God led you to this dr. It's so easy for adults to think, discuss, and respond as adults---regardless of whether little ears are present. I'm thankful for the consideration. I've been praying and following.
judy in Washington, D.C.
Hi Sandy, I read this several days ago but when your new post popped up, I "ran" over b/c I thought it was something urgent about Sydney! OK, phew. Glad it was a special memory and not something bad. :) I am so glad you had a good visit with the new doc. I get how important it is to feel like you trust the doctor and that they have your child at heart. Great news! Enjoy your Thanksgiving!!!
I think that is WONDERFUL that you have met a doctor that you can trust! What a PRAISE!!
Please keep us posted on your precious girl :)
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