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!!

Merry Christmas y'all!

We hope you all have a wonderful Christmas, filled with joy and peace. We plan to have a low key Christmas around here, just enjoying time together and remembering the reason for the season, the birth of CHRIST. 

In my typical fashion, I waited too late to send out Christmas cards this year. I've used Smilebox before and I like them, so I am relying on them once again to help me out of my last minute pinch!

Just click on the link below, I used our Disney pictures so I am fulfilling that promise also!

http://smilebox.com/playBlog/4d7a51314f444d344e6a553d0d0a&blogview=true

I've Done It Again...

I've went too long without updating... that's something I said I wasn't going to do anymore.
Oh well, I'm here now and that's all that counts, right?

I hope that y'all had a great Thanksgiving filled with everything that makes you feel all warm and good inside!
I think that Thanksgiving for special needs families is a little different than others...we seem to have long since formed the habit of being thankful every day, not just one special day out of the year. Oh yes, I know it is easy for us to get caught up in the busyness of each day, but I really do believe that for the most part, we go through each and every day realizing just how blessed we are to have our children...we've learned to recognize blessings that many others unintentionally take for granted. You know, when you struggle or when you spend so much time wondering what the future holds, you learn to "live in the moment" and say many extra prayers of thanksgiving, not just on Turkey day, but all year round...
We had an absolutely great, but non traditional Thanksgiving...we spent the week in Disney World!! Yep, first time in my life I have spent a major holiday away from home.
We started talking about this trip when Sage was in the hospital and it just went from there. It worked out perfectly that Tehya's school break and Richard's long weekend lined up with each other so we off we went!
There really are no words to describe the amazing time we had. Our resort was totally "us", we had perfect weather, and of course everything was all decorated for Christmas. We met princesses, had dinner with characters, saw 3 great musicals, we had front row seating to the castle show and fireworks, rode some crazy rides (well, Richard and Tehya did! Sage and I stuck with Pooh!), Sage was made a honorary Disney citizen, and most of all, we gave our girls memories of a lifetime! Richard had never been and I went as a child, but SO MUCH had changed so really it was like my first time to go all over again!
We laughed so much every day, even on the way home, and I think we have all had a bit of a hard time getting over our "Disney buzz".
Sage is already asking to go back. Maybe in a few years, but our next big trip is out West! One can only take so much of the crowds!

Oh, Richard and I went on a little weekend getaway the weekend before Disney and had a blast. We
spent one night in Chattanooga for a concert and then went to do some deeper exploring of our little getaway spot. Let's just say that if we ever had a doubt that we want to have a place there one day, that weekend sealed the deal.  We've been going "up there" for years, since Tehya was younger than Sage, and we've always known we wanted to have a place there...but that weekend just really did it! We discovered an area that we've been missing and that was just it..I guess you could say that one look is all it took to know we had found the right spot for us!

I guess the other bit of news is that Sage had her first rod expansion the end of September and did just great. We went up on day before, met with our doctor, and she had her surgery bright and early the next morning. Everything went perfectly and we will go back in a few months.
There is however, some very sad news out of our AMC/VEPTR community. A little boy who recently had rod placement passed away this weekend. It is a very sobering reminder of what our children face and kind of helps drive home that whole "being thankful for each and every day" thing, doesn't it?
Sometimes the worry and downright fear of what the future holds can drive us almost crazy. I seem to be having a hard time with a few things lately. It comes in cycles...sometimes I am great, strong
physically and emotionally, and other times...well, other times I really could just curl up in ball and lay in bed and cry.
There are just things that hit you out of nowhere. The best thing to do during those times is count your blessings. It seems that there's nothing like taking stock of all you are blessed with to help run the blues away...

You know, I've held alot of things in for so long and as I have went back and looked over some of my earliest post that I have taken down, I realize I was sharing my {very} raw feelings...I don't know if I can do that anymore, for several different reasons, but it does feel good to be here writing again and I promise I won't wait so long next time.

See you soon with some Disney pics!

More Catching Up...

Owls have been Sage's thing lately. Owls and horses. Thougth I'd change the layout to suit her current fancy and give a little nod to Fall. I can't help her with the horses right now (other than her stick horse, Sam) but we have plenty of owls around here. It's getting that time of year that we hear them more often and one night last week when she and I were pulling down our driveway, she beat me at spotting one. She has her Daddys eye for wildlife! Of course we had to stop and "hoot" to it. It just spun its' head around and looked at us like we were crazy:) When we pulled back up a few minutes later, it was on the ground. Guess it had caught a mouse for supper! Every time we pull up the drive now, she looks for her "hoot" as she calls them.
Yes, hearing the hoots is a sure sign that Summer is loosening her death grip and a reminder that we will be able to walk outside (eventually) without immediately being drenched with sweat.
It seems like we stay so busy lately, but I don't feel like I am getting much done. Just a lot of wheel spinning. We have had major house projects going on outside, one of the absolute best being Sages' walker ramp. I CAN NOT tell you how great it is to have her be able to get all the way to the truck without having to pick her up. So much better for her and for me. A bonus is the little side deck that the ramp comes off of, all built to tie into our existing porch. It catches a nice breeze and it is nice to sit out there at night especially. We have to redo the rest of the porch to match the new deck and railings but we will get it...one day! We've also finally gotten around to putting the stone around the bottom of the house. We've known for years that we wanted to do that but have just had to put it on the back burner until now. Lots of other home projects going on, can't wait to get our outdoor living area done, but all in time I guess! A husband that works shift work plus all the overtime he can doesn't leave much time for anything else.
We did make time for a beach trip before school started and we have a very special vacation planned for the Fall. I smile just thinking about that trip. When we even mention it, Sage just gets beside herself:) Honestly, I do too!

We will go back to Memphis before too long. I am dreading it, but also just ready to get it behind us so we can get on with the next 6 months of our life. I guess I feel like everything is broken into 6 month intervals now...
Of course, this hospital stay will be muuuch shorter than our first. As long as it all goes well, we should be back home within a couple days. I ask all of you to pray for her that it goes well and that we are not faced with some of the complications that so many of our VEPTR friends are facing. There seems to be a new family dealing with awful infection every week and without going all off into what that means for kiddos like ours, I will just say that if the infections are bad enough, they can lead to rod removal, washouts, antibiotics that really don't even work against them (but what else do you do???), and can mean the difference between life and death in some situations.
I know that Halo and the rods saved Sages' life, but there are some times that the realization of what we have done punches me in the gut and literally makes me loose my breath. My tiny girl has titanium rods in her back, attached to her vertebra and her ribs with hooks, bolts, and screws. We did this to save her life, but at the same time, she has to go through surgery after surgery, each time possibly exposing her to life threatening infection and complication. Don't get me wrong, I am GRATEFUL for the technology and knowledge that allows doctors to help kids just like Sage. But that does not keep me from being scared to death each time we have to go back.
Overall though, she is doing great and I can say that the good days definitely outweigh the bad.
Of course our lives are different than others. My closest friends are other special needs moms. My heart holds hurts that only special needs parents can understand. Yes, there are things we are still trying to figure out about Sage. Things we may never have answers for. But you know what? We make it work. We live, laugh, and most importantly LOVE, together. We do the best we can and we just make it work.
In all of the complexity that is Sage, there is a simple innocence that she is blessed with. Oh you better believe, she is such a typical 6 year old in so many ways, but there is a precious innocence that we cherish.
You always hear people say that God picks the right parents for special kids...well, I think it goes both ways. People might say Sage is "lucky" to have us, but Richard, Tehya, and I are the ones who are lucky to have her.
And I honestly think that as she is right this minute sound asleep in the middle of mine and her Daddys' bed, she knows she rules this roost with her little iron fist:)

Tehya turned 14 today. Growing up way too fast, but into such a wonderful young woman...Time just rolls on, doesn't it???
Birthday activites all weekend have left her (and me) worn out. I think I counted 10 teenagers in my house at one point...that's enough to wear anyone out!

There is so much more going on in our little world, we have so many dreams and plans for the future. But as they say, one day at a time, right??? It is good to at least have things to work towards. I guess I would feel lost if there wasn't some project going on!

You know you're behind on blogging when...

you are updating about things that happened shortly after the end of the last school year and it's already time for school to start back:)

In June, Tehya and a classmate were recognized at the State Duke TIP Recognition Ceremony at our very beautiful University of Alabama. They were chosen as part of Duke TIP 7th Grade Talent Search due to high scores on their SAT tests. They were eligible to take the ACT in late Winter. Tehya actually took hers about a week before Sage's surgery (no distractions there, huh?)
Both girls made outstanding scores on the ACT and were invited to the state ceremony to recognize those high scores.

To say that Richard and I are were very proud (and a little surprised given the fact that her baby sister and Momma had been gone for almost 2 months and that she herself had been "living out of her suitcase" as she calls it) would be an understatement! Just to be chosen for Duke TIP is a great achievement, but her awesome ACT score and the fact that she was recognized for that at the state ceremony was just icing (crimson icing at that:) on the cake. The guest speaker at the ceremony was wonderful and had some very wise words, not just for the students, but for the parents as well.

It's kind of funny, she got her results in the mail the same day we came home from the hospital. She and some other friends and family had "welcome home" signs and balloons all the way up the road and our driveway and while she was standing there waiting for us to pull up, she walked over and checked the mail. She was so shocked at her score that she still had tears in her eyes as we pulled up! (and they weren't all because we were home...she was literally SHOCKED!)

After so long of everyones focus being on Sage, the long hospital stay, and her surgery, I think it was perfect for Tehya to have her own place in the spotlight:)  

Our beautiful and smart girl. So proud of her!

              

Digging to China

I discovered this movie tonight and finished watching it just a few minutes ago...oh my goodness, what a great movie!!!
It brought up SO MANY of the things that we as parents of special needs children face. For example, what happens to our special kids once we (their parents) are gone, how do we deal with people who just don't understand our children or don't want to understand, how do we deal with the way our children are treated by others, and how do we keep our anger (and hurt) in check when our children are treated cruelly... Please watch the whole movie, not just this clip! You can find it on Netflix and probably on DVD also. It is appropriate for most ages and in my opinion could be used as a great teaching tool. There are a couple scenes with the big sister and a boyfriend that are not appropriate, but can easily be skipped over.    

Every Checkup...

Part of her 9th floor posse came down to the clinic...bearing gifts of course:) Thanks girls!   

L-R: Jazzy, Ms. Cassie, Jen-Jen, Sage, Zoie, and Ms.Aimee (who came in on her day off just to see Sage:) We didn't know we were going to get to see Jazzy, a previous Halo patient. So glad we got to see sweet Zoie also!

                     should be so much fun!


We went back for Sage's check up a couple weeks ago and everything looked great.
As you see from the pictures we got to catch up with some of her nurses, as well as a few who were not in the pics.
I seriously can't say enough about the hospital, our nurses, and our doctor. He is one of the most caring professionals I have ever met. A few weeks ago, a package for Sage came in the mail from him. He had sent her a magazine article that he had came across that had a picture of Sage with an actress she met while in the hospital. He had also included a handwritten note...oh yes...we seriously love Dr. S:)

Anyway, xrays looked great and we are "free" until her expansion, which is several months away.
We are just continuing on with the healing process and therapy. She has had to sort of re-learn some things, just because her center of gravity is so different now. This past weekend we also started a new form of therapy. It is more of a homeopathic kind of thing and we are hoping for good results.
We have to travel a little ways for it, but thankfully it is to a place that is really special to us and a place we would go to, therapy or not. I found out that she could get this particular treatment there when we were up there back before Christmas and I knew that as soon as she had recovered enough from surgery, I would be taking her for it. Actually, it is kind of like "therapy" to Richard and I just to go there, so I guess you could say it is good for Sage's body and good for our souls.
Tehya went with us this past weekend, and it was a nice little mini vacation. We laughed more than we have in a long time and everyone was so relaxed and had a great time. Sage kept us rolling with her silly self. I swear I don't know where she comes up with some of the stuff she does! We were eating in this great little place before we headed home and all the sudden she started looking at us and making these crazy faces. (kind of like a "what are you looking at" face, except she was grinning from ear to ear. She would do it to me, then Richard, then Tehya, then back to me, until we were all rolling. We about fell out of our chairs laughing. I know people were thinking "what is wrong with those nuts"! One of her new things is to feign jealousy whenever I even lay a finger on Richard. If I just lay my hand on his arm, she starts saying "NO! NO! MY DADDY! MOVE!" and then when I stop, she pushes my hand or arm towards him, wanting me to play her "game" some more. 
She is in so many ways, every bit a "typical" 6 year old! Always being goofy and making us laugh. She is a mess and really is the joy of our lives. I can't imagine our family without that sweet angel.
She is spending the night away from home tonight, and when I went in to tell Tehya goodnight, she wanted to know if I had called and checked on Sage and if she was ok. I'm telling you, those 2 are as thick as thieves and the protectiveness Tehya feels over her is precious.
We are so blessed with our girls. Both of them are truly gifts to us.
Tehya is growing up so fast, and I am not ready to think of this house without her here.
She is so into friends and having fun right now and I am savoring the weekends of a full house, a yard cluttered with muddy four wheelers, a porch full of muddy shoes and boots, a countertop with pizza boxes stacked up, and a bedroom floor strewn with sleepover bags. I know, just like the song says, I am gonna miss this one day.
She won an award for her class and she, a fellow classmate, and a few others from different grades got to go on a trip today in a hot pink Hummer limo. She didn't even act like it was a big deal...she was happier with the $6 shirt she found at the mall! Glad to know that glitz and glamor won't blind her! She definitely has a good head on her shoulders!

Once more, I just want to thank you all again for all the prayers and support as we have went through this with Sage. I know I have been slack about blogging, but I do read all your comments, emails, and messages and they mean so much to me.
We are so thankful to be on the other side of some very hard days, and these laughs and crazy times we share as a family are not taken for granted by any of us.
Sometimes, just like over the weekend, after Sage had walked every step of one of the ADA trails in the area we were staying in, I say something to Richard and Tehya like "Do y'all even realize how blessed we are that Sage could do what she just did?"
And they say to me..."I was thinking the exact same thing".

Seriously, just blessed.