Savanna

Savanna

Monday, March 6, 2017

First Check Up Since the Brace Went On!

Did you notice the new blog photo??  Look at all of those casts!  It's crazy when you see them all lined up like that!  What a brave superhero we have.  I took a copy of this photo and had it framed to give it to Shriner's.  The quote says "Thank you to Dr. Pete and the Shriners' staff for helping our little super hero beat scoliosis!"  We were able to get it all framed up in time to take it with us to her check up today.



Before we get into her check up, here are some of Savanna's latest adventures...

Adventures:

Highlights from our family photo shoot!









Building a bird house with daddy


Thanksgiving visit to family



Hanging with Anna and Elsa at a friend's birthday party


Christmas Time - some new Christmas presents!  A.J. (formerly known as Spunky and Spunka Wunka) is sporting a matching nightgown to Savanna's.



Grocery shopping with the Catastrophe Crew...



Big snow storm!  The kids (and parents) had a blast sledding just up the road from our house.





Silly times



Hiking
 Play time


Emerson's Birthday - our little (big) man turned two!!





I think he's getting a little too big for the baby scale!



Brace Check Up Appointment:

This morning we traveled back to Shriner's for Savanna's first check up since she went into the brace.  We are always a little nervous before her x-rays because we are not sure what we are going to see.  However, she has really worn the brace day in and day out, with only a two hour break most days (occasionally longer due to sicknesses), since she got it on.  We have been super compliant with the doctor's instructions.  We think that she has grown quite a bit since she got the brace on maybe due to the brace not being quite as constricting on her, maybe because she was due for a growth spurt, or both.  Hopefully we were able to capture that growth during the wearing of her brace.

X-rays from April 2016 and September 2016, respectively, ranging from 12 to 19 degrees.


X-ray from today below (on the right).  She's measuring at 15.3 degrees right now.  So, not the sought after 0 degrees that all scoliosis patients would like to achieve, but we are on our way!  It's really interesting that her curve seems to move around a bit.  In September it was in the lumbar (lower) region.  Now, it has moved up higher into the thoracic region a bit.  Ultimately, these are good results for a brace-wearer.  Not only is the brace helping to hold her curve, but it seems to be helping her with more correction too.  Her doctor was very pleased and said, "Things are looking good.  What I see in person is what is reflected on the x-ray.  See you in 6 months!"


I am always a little bummed after her appointments because even though I try to keep reasonable expectations, I am always hoping for the results that will help her get out of the brace for good.  We are just not quite there yet.  However, we are doing everything we possibly can right now, AND she is continuing to improve.

After Savanna's appointment with Dr. Pete, we went to the POPS department (Pediatric Orthotics and Prosthetics Services) to get her brace adjusted slightly.  David in POPS gave Princess Savanna/Anna (from Frozen) a new tiara today!


Then, we went to see Arynn in Public Relations to give her Savanna's picture to hang up.  She said they will hang the photo in the surgery waiting room.  I think that is an awesome place for the photo.  I can't wait to see it once it's up.  Also, I can't wait for Dr. Pete to see it too!


Not only did we get to see Dr. Pete again today, but we also got to see Savanna's scoliosis buddy Lyla!  Lyla's mom and I have been online friends for several years now since our little girls both started the casting journey, and today was the first day that I got to meet them both in person!  It felt like I've known them for a long time.  :-)

Lyla is now in a brace too, and has been since last May.  It was awesome to hang out with Lyla and her family today.  Savanna and Lyla were like two peas in a pod, and they had a blast playing together.  They got to meet Sidney, a.k.a. Miss Greer, a lovely pageant winner who has also been a patient of Shriner's (and Dr. Pete's) for the past 11 years due to her scoliosis.  She was officially released as a patient today at the age of 21 after surgery at the age of 12 when 2 titanium rods were placed in her back to help her curve.  Unfortunately, her scoliosis was not found until she was 8 years old, so casting was not an option for her.  She did wear a couple of braces before her surgery, but she was not able to get the correction she needed.  What a great feeling today was for her to be released as a patient and to have no restriction on her activities!


Walking around Greenville with Lyla



"Feeding" coins to a boar (warthog?) for good luck


Saying goodbye to our new friend.  Awww...



Next appointment:

Savanna will have another check up sometime in August, and she will have another x-ray.  Even if this x-ray shows that she is continuing to be stable or improving, I imagine she will keep wearing the brace until she grows out of it.  If her curve is still good at that point, maybe she'll be brace free, but maybe not.  We'll see what her doctor has to say.  I have to keep reminding myself to be patient...

I'll post again after that appointment.  Until then, please have a wonderful spring and summer!!

As always, thank you for reading and for keeping Savanna and all of her scoli warrior buddies in your thoughts!



Wednesday, November 2, 2016

It's Brace Time!

After 2 MRIs, 16 plaster Mehta casts, and numerous x-rays it is now time for Savanna to get her brace.  It is sort of her "diploma" from graduating from the casting process.  We are so lucky that casting was a successful treatment for her!!  Before we get into her brace fitting day, let's review some recent adventures...

Adventures:

Hanging out at Burial Beer Company




Beach trip to Sullivan's Island!

Fun at Ft. Moultrie



Savanna and Emerson had so much fun playing in the sand.


Lunch by the light house



Picking up sea shells at Isle of Palms


Beach biking!




Silly girl


Boardwalk in Mount Pleasant





Obligatory sunset photos :-)




Cast Off Party

Way back in January of 2014, our wonderful friends had a "Cast On" party after Savanna got her first cast to show us their love and support.  Here is a link to those party photos.  Therefore, we wanted to have a "Cast Off" party to help celebrate Savanna's cast removal.  We were celebrating her strength and bravery throughout the whole casting proces,s as well as celebrating our friends that have provided us with so much support.

Fun in the bouncy house



Watching "Savanna's Casting Journey" video (more on that below)






Hiking at DuPont State Forest





Pumpkin Picking and Carving





Fun with Emerson


Halloween

We were, of course, the Pawsome Paw Patrol, with Savanna starring as Everest and Emerson as Chase.  I was Skye, and daddy was Ryder.  We had a blast on our neighbor's Halloween Hay Trailer!






Video:

I made a video to showcase Savanna's casting journey over the past three years.  I didn't even cry while making it, if you can believe that.  However, while watching it with all of our friends around at the "Cast Off" party, I may have shed a few tears...  I hope you enjoy it!



Last Cast Removal!

We went to Shriners in October to have Savanna's last cast removed after it had been on for 3.5 weeks.  They used this cast to help mold for her brace.  We would usually take the casts off at home; however, for a very clean cut, they wanted to remove it with the cast saw.  Savanna did not prefer the loud saw's noise, but she was really brave, and didn't even squirm.



The AMAZING Dr. Pete!  He and the Shriners' staff have helped to take great care of Savanna and our family.



The Brace:

We picked up Savanna's new TLSO (thoracolumbosacral orthosis) brace today.  I would be lying if I said that this was not an emotional day.  In theory it is a celebration, right?  Yay for the brace!  However, in practice, it really does suck that she has to go back into a torso contraption.  Yes, it can be taken off, which is really nice, but when your baby girl cries when it is put on because it is "hurting her tummy too much," your heart breaks a little.  Anyway, of course it is the best thing for her right now, but it still stinks.  It definitely seems slimmer than the cast, at least a bit, but it is still a pretty rigid structure on her little body.  Thankfully, the prosthetics guy was able to adjust it, and she did not complain anymore.  She has had it on since 12:30pm today and is sleeping in it now.  Fingers crossed that she gets used to it quickly.  What a trooper she is!!

Pretty purple brace with colorful stars


And, of course, Everest is on the side!!  It's her Paw Patrol brace!



Her "in brace" x-ray shows a curve of only 2.5 degrees!  That is really great news.  Maybe she'll even continue to achieve more correction in the brace??  (I certainly hope so, or at least that it helps hold her curve.  Dr. Pete said that he has had to put some kids BACK in a cast before...  That is not a possibility we want to consider, if we can help it.)  She will wear the brace pretty much all of the time (22-23 hours of the day) and will only take it off for baths, ballet, and swimming.



Next Steps:

Savanna goes back for a brace check-up and x-ray in March 2017.

This will be my last blog posting for a while, but I will make sure to provide another update after her next x-ray in March.  I have really enjoyed writing this blog for Savanna and all of you.  It has been a labor of love and has proven to be fairly therapeutic for me as well.  I hope it has helped our friends and family to stay 'in the know' about Savanna's journey.  I also hope it has helped to raise awareness about infantile scoliosis and has provided support and information to those families going through the same journey.

Thank you to Dr. Pete and Shriners, thank you to ISOP for bringing Mehta casting to the United States and being a resource for families in our shoes, and thank you to our friends and family for all of your support.  Also, thank YOU for reading!  Please have a happy and safe holiday season!

Here's to lots of swimming, real baths, and straight spines!  ~ Lisa