Superstar Sage

A while back someone from PR at our hospital contacted me to let me know that Sage's doctor had requested that her story be featured in a publication that goes out to other pediatric orthopedic doctors throughout the country. We were very honored and agreed to allow them to do it in hopes that Sage's story might reach another family facing a similar situation and give them some direction that they might not have had otherwise. I know all to well how it feels to be so afraid that you are making the wrong choice or to not know many others who have faced what you are about to go through. I can only pray that seeing how successful Sage's procedures were will help ease some of those fears for some other family.
They also contacted me a few weeks later and asked about sending the story to our local newspaper so Sage has been quiet the little star lately...well more than usual:)

As I have said so many times before, I just can't relate to you with mere words how wonderful Le Bonheur is. Not long ago I was able to take a friend up to deliver blankets to an organization that works through the hospital and in her words "You just think that some of these other hospitals are great...until you have seen this place."
My best friend also recently brought her daughter down all the way from Northern Virginia to meet with Dr. Sawyer. I went up to be with them while they were there and she had the same experience, only with the added bonus of seeing just how awesome Dr. S and staff are. She also commented that "even the support staff are incredibly friendly and helpful." And it's the truth. From the lowest on staff to the highest, everyone there seems to be so aware that the people who helped bring Le Bonheur Childrens Hospital into existence meant for it to always live up to the expectations that were set all those years ago. And I can't help but think that those ladies from the sewing circle that started it all would be more than thrilled to know that not only have those goals been met, but they have been greatly exceeded in every way. Yes! LBCH came to be because of a few ladies in the Memphis area who sewed clothes for underprivileged children and provided transportation for them from the local orphanage to doctors appointments! 
Friends, just about anything is possible if you get the right people behind it!
I will include a link to the hospital website in case you are interested in knowing more about it.


Here is the picture and story that were used in the paper. (The one that went out to the medical community was a little more medically descriptive and included some xrays and other pictures that I was not comfortable having put out for the general public so they just used a recent snapshot instead.)
 

Six-year-old Sage Downey of Toxey, Ala. was born with a congenital neuromusculoskeletal disorder that affects various joints including her knees, feet and spine. The disorder caused her to develop progressive neuromuscular scoliosis at just 6 months old.
By age 5, Sage’s spine had curved to nearly 100 degrees, which caused the growth of her chest and lung to slow significantly. Her parents knew it was time to look into more advanced treatment options for Sage. If her curve progressed any further, she could have severe respiratory problems.
A support group for scoliosis families on Facebook led the Downeys to Campbell Clinic Orthopaedic Surgeon Jeffrey R. Sawyer, MD, at Le Bonheur Children’s.
“We were so close to going to a center in San Antonio, Texas. I had already filled out the forms. I was so thrilled to know that there was doctor closer to home who could help Sage,” said Janet.
The Downeys’ excitement grew when they met Sawyer at their first consultation in September 2011.
“My husband and I walked out of the appointment, looked at each other and said ‘It’s settled.’ We had a sense of peace we didn’t have with any of the other specialists we’ve seen for Sage, and we’ve been all over the country,” Janet said.
Sage underwent halo traction at Le Bonheur on Jan. 3, 2012. After almost two months at the hospital, Sage’s curvatures had reduced by 50 percent, as hoped. She underwent VEPTR implantation on Feb. 22 and remained at the hospital for another five days before going home.
Sage is doing well now and is much more comfortable, said Janet. Her curve has reduced to around 50 degrees. Sage and her family return to Le Bonheur every 6-9 months to have her rods surgically expanded.
“I am fortunate to have been able to meet and take care of Sage and her family. It is a huge stress for a family to essentially live at the hospital, away from home and their support system, like the Downeys did for two months. The people at Le Bonheur embraced Sage and her family during that time. I know that many of the staff at Le Bonheur still keep frequent contact with Sage and her family, based on the number of ‘Sage updates’ I get," said Dr. Sawyer.
“Our goal is to be able to provide care for any child with any spinal condition, both surgical and non-surgical, that come to us at Le Bonheur. The fact we can provide the most technologically advanced care for extremely complicated patients like Sage in a patient and family friendly environment makes all of us proud.”

I just want to add that if anyone reading this has any questions about her treatment, our doctor or hospital, just leave a comment, including your email address so I can respond to you. I don't publish comments on the blog anymore, but I do read them all. I stopped publishing them because I have found that by knowing they won't be published, people are more likely to be more open and honest about their own issues or feelings...and I can totally relate to that~

Here is the link to the hospital website page that gives more of the history of LB and of the goals that have been reached in past years.     http://www.lebonheur.org/news-events/history/

Year Ago Today...

A year ago today, I was making sure that the last of our bags were packed, spending time with Tehya, making my homemade yeast rolls to freeze for her to eat while I was gone (so she could have a little bit of Momma's cooking!) and trying to not vomit from the knots in my stomach. You see, I was getting ready to leave my little hill and take Sage into unknown territory for what I knew would be months. I very clearly remember telling Richard to just hurry and get us out of the driveway, telling myself to not look back. I had worked for months to steel my nerves and my resolve and had been emotionally distancing myself from others. I would not, I WOULD NOT, fall apart, I would not cry. I reminded myself repeatedly during the months before and while it was all taking place, of the last words my Daddy said to me "Don't you ever forget who you are", in "Leon" terms that meant, "Girl, you are part me. And that means that there is a toughness in you that can do anything." Lord, he had no idea how much I would need and recall his words. I like to think he would have been proud of me, but I am glad he was not here. His old heart could not have taken seeing Sage having to go through it all. But with the Lords help, mercy, and giving of much, MUCH grace, we made it. We survived a long hospital stay, weeks and weeks of her treatment, and she survived a 7 and 1/2 hour surgery. She has been back already to have her rods lengthened and once again, with the Lords mercy and grace, all went perfectly well.
I can't say I am sorry to see 2012 go. I am praying for a much better 2013, in regards to many areas of my life. One of the last things I did before we left was leave a note for Tehya in her room. At the end of it, I wrote "This is a "Winter" in our lives, but don't forget, Spring always follows the coldest and worst of Winters". I hope that just like I remember my Daddy's words to me, she always remembers that. And I want to thank each and every one of you who had any part to play in helping my family get through one of the worst "Winters" we have had since Sage was born. Whether is was sending a card, cooking a meal, hauling Tehya to her games or school, or saying a quiet prayer for us...we couldn't have gotten through this past year without you! Now, here's to a muuuuch better 2013!!