Our family is very lucky that we found the Infantile Scoliosis Outreach Program (ISOP) when we did. Because of ISOP, Savanna is currently receiving a life-saving treatment for her scoliosis that, to date, has used non-invasive surgical techniques. ISOP was started by a tenacious mom, for whom the status quo of treatment for her daughter's young spine was not acceptable. Unfortunately, as with any medical condition, there are those for which treatment did not come early enough. I never met Liv or her mom Heather in person, but through our shared journeys, I have come to "know" Heather and respect her very much. Heather is the reason we have Mehta casting in the United States, and she's the reason Savanna may not need surgery in the future (or at least it will be greatly delayed). So, when a fellow "mama bear" is in pain, I feel immense pain for her too. I feel pain for the loss of her one and only beautiful, spirited daughter, whose life was taken too early due to her medical condition. I feel "survivor's guilt" that because of the struggles of this mother and daughter, my daughter will hopefully not know the pain they had to go through. And, ultimately, I feel deep gratitude for them for all that they have given, and I will never forget what they have done for our family and all of the other young "scoli warriors" in the world.
Please read the article below in which Heather is interviewed about ISOP, and please send a prayer to Heather to help her cope with the loss of her daughter. Heather, we all are mourning with you...
http://denverlifemagazine.com/2014/12/hearts-of-gold/
Heather and her daughter Liv in 2014.
Another mom captures my feelings very well in her "thank you" letter to Heather:
http://themighty.com/2016/03/to-the-grieving-mom-who-pursued-a-treatment-for-progressive-infantile-scoliosis/
Casting News Story
Here is a great news story on the Mehta casting procedure. It shows a child on the type of traction table that is used for every one of Savanna's casts. Please check it out to have a better idea of the procedure she undergoes every casting. One item to note is the that news agency states there is a 90% cure rate for children for whom casting is started early enough. That number is likely not correct. Savanna's doctor puts the cure rate much lower, at closer to 33%.
http://wgntv.com/2016/03/03/dramatic-journey-for-4-year-old-with-scoliosis/
Cast Removal
We took off Savanna's cast on the Monday before her surgery, which was on a Friday.
Savanna keeping herself entertained while her dad removes her cast.
It's hard to tell from this photo because she's leaning a bit, but I think her spine is looking good. Her skin looked really good too!
Savanna's 14th Casting Day
I was able to go to Savanna's casting this time! It's the first time in a year that I was able to attend casting day, and I was so happy to be able to go. It's been difficult to sit on the sidelines this past year.
The day started with us arriving at Shriner's by 8:30am. First, Savanna had her pre-op appointment, which included an x-ray. I am happy to report that her x-ray showed a curve of ONLY 13 degrees!! This is great news! Her last x-ray in December showed a curve of 24 degrees. She was soooo excited to get her x-ray. What a big girl!!
Her beautiful spine, so so close to being totally straight at 13 degrees!
Here is the x-ray from December 2015 when her curve was at 24 degrees.
After x-ray, we stopped by the Bear Cave to get a new bear, outfit, and accessories. This is "Rocker Bear." He is wearing Avengers jammies and Olaf slippers and carries a guitar.
Savanna also got to play some games and work on some crafts while awaiting surgery.
Next we went to the pre-op room where she and daddy played with racer cars and played some air guitar.
Finally it was time to head back to surgery. Savanna is such a trooper through this whole process, but heading back to surgery is the scariest part for her. She does not like the mask they put on her to administer the anesthesia gas. I'm glad they let a parent go with her back to the OR. Today I was able to go.
Her casting surgery went well. However, coming out of anesthesia is not a fun experience for her. At least we are now able to be with her in the recovery room while she recovers. After surgery, she went back to her room to get a snack and get her cast dried. Next it was time to head to the cast trimming room. There's nothing like a good wagon ride to lift your spirits.
Cast flaring, trimming, and petalling.
She chose dinosaurs and purple coban for her cast this time. She wanted dinosaurs like her buddy Lyla (see below for more on sweet Lyla), and purple because it is just one of her favorite colors. If you ask what her favorite colors are, she'll tell you "pink, purple, and magenta." If you say you don't know what magenta is for sure, she'll let you know very matter-of-fact that it is "a pinkish red color." She's such a smart little cookie!
Because Savanna is now down to 13 degrees, her doctor recommends that we continue casting for the next six months. However, after that, whether there has been further correction or not, he suggested that we move to a brace. First, kids grow more slowly at this age (she's almost 4), meaning further correction is more difficult, and also apparently doctors disagree about at what measurement a patient is actually considered "cured." A zero degree curve (i.e. no curve) is really our goal here, but I've read that generally under 10 degrees should not get worse again. So, we'll wish for zero, but be okay with a little more.
This is really cool news about our path going forward. We finally have a game plan with more definitive time lines than we have had this whole casting process so far. Unfortunately, this means another summer in a cast, but only 6 more months until brace time!!
Savanna's amazing doctor, Dr. Pete:
Savanna's next casting is scheduled for June 24, 2016.
Lyla's Awesome Progress
Savanna and her buddy Lyla started casting at the same time, and I am extremely happy to report that Lyla is now nearly done with casting and will be moved to a brace in May! Because of casting, she went from an 80 degree Cobb angle and 40 degree RVAD to now under 10 degrees Cobb angle with minimal rotation. It's so amazing! Her mom shared some before and after photos with me.
This is really awesome news for Lyla and her family! Lyla's mom was interviewed about her family's experience at Shriners:
http://m.staugustine.com/news/local-news/2016-04-10/shriners-offer-help-time-need#gsc.tab=0
***Thanks for reading and keeping us and our fellow scoli warrior families in your thoughts and prayers!***
