Shriners Update!

Well, it was time to get Kadence fitted for a new brace today.  Her old one had started rubbing sores periodically and was obviously too small.  That darn girl just needs to stop growing.  :)  We now know to brace for a long day.  I pack a backpack for each girl full of things to do, snacks and treats.  It works out pretty well.  When we arrived we saw this sign below that invited you to help yourself to stuffed animals equipped with batteries.  I am always so grateful to people who are thoughtful enough to remember Shriners when making donations.  It isn't very well known in Utah especially with Primary Childrens right around the corner.  I didn't know about it until about 4 years ago when they changed our lives forever. 

To sit here in the waiting room and watch as patients came and picked out their new stuffed animal was priceless. The pure joy on their faces will last me a while. How blessed we are! I am always so humbled when going to Shriners. It reminds me how happy kids can be when life is handing them nothing but trials. One little boy was being wheeled out in a wheelchair by his mother. He looked up at her and said, "Mom these are my favorite shoes ever!" He was wearing his brand new prosthetic shoes. To look at a trial and see nothing but good? I think we could all use a trip to Shriners to witness such positive attitudes. It always rubs off on me anyways.   We were called back to get Kadences xray which is not something we dread anymore.  She loves getting xrays versus her inconsolable scream from when she was 3 and under.  (Thank heavens!)  She knows she'll get a sticker and she also knows that the lady will give her one for her sister.  This time the xrays were different.  She always has David go with her so I didn't get to see it but David explained that they did one xray as usual without her brace on and one in traction.  It has been a while since she has had an xray without a brace actually so I was interested in seeing how that turned out and then I was excited to see how the one in traction went.  To put her in "traction" basically they strap something under her chin and pull one way and then pull her feet the opposite direction.  She was, as usual, very cooperative as they did this.  It shows the flexibility of her spine and gives an idea of what her spine will look like AFTER she gets rods fused.  We then headed off to her Dr's office where we put the batteries in their new stuffed animals.

While we waited for the Dr we saw the xrays were pulled up on the computer.  I immediately panicked.  I was SO nervous the Dr would insist on putting Kadence back in casts.  I knew that we would deal with it if it was best for her, but I was dreading the news. 

Here is the Xray IN traction-without a brace (37.9 degrees):

Here is the Xray without traction-no brace (70.8 degrees):

 Keep in mind that both of these xrays were taken minutes apart.  Wow!  That was rough to see.  We usually only see the xrays of her while she is wearing her brace.  Its one of those things that makes you realize how bad off she is.  Not to mention that the longer she is without her brace, the more slumped over she gets so if we waited an hour or two I'm sure she would be worse than 70 degrees. 

 

The Dr didn't give us bad news....YAY!  He said that with her next brace they are going to focus more on the rotation of her rib/spine.  He had the orthopedist in charge of Kadence come in so he could explain EXACTLY where he wanted to apply pressure and how he wanted it molded.  The next brace will be different than the others we've had.  I'm hoping we adjust quickly.  He then talked with us about the xrays and he remains optimistic.  For now we are still able to avoid growing rods.  We are ultimately just trying to delay surgery as long as we can so we can do less surgeries.  If we can delay until she is a teenager she will only need one surgery.  He's honest and hasn't ruled out growing rods, but for now he doesn't see why we couldn't wait.  Growing rods are VERY risky and are not something David and I want.  They tend to have high risks involved, but the risks of having such terrible scoliosis are also high.  Its finding a good balance thats important. 

 

Having mentioned how risky it can be to have such a high degree of a curve I must mention that David and I have been wrong about one thing this whole time.  We thought that Kadence started at 78 degrees.  We distinctly remember Primary Childrens telling us that she was at 78 degrees and that at 80 internal organs can begin to be damaged.  That was what drove us to switch to Shriners.  When we arrived at Shriners they did their own xrays.  Apparently Kadence had progressed to an 86 degree curve.  Yes, damage at 80....and she was at 86.  I'm so so so grateful that her little body didn't fail her.  Shriners has had people show up and go into pulmonary arrest right in the doorway because of a curve this degree.  Shriners has saved my babies life and I'm so overwhelmed with gratitude. 

 

Kadence is still 34 pounds which she has been for well over a year.  She picked a purple brace that has stars on it, a soccer ball decal and black straps.  I tried to talk her into purple straps so it matched, but she wanted black and its her brace so she will get black! 

 

We rushed from Salt Lake to dance in South Ogden.  We then realized why it is NOT a good idea to lock two kids in a dr office/car for hours and then send them to dance.  They were far too wiggly from being so cooped up.  Nobody more than Shelby.  Enjoy a few videos of her being naughty.  I was dying and apologized to teacher Lori after.  :)  The poor girl just could not sit/stand still one second longer! 

 

 

 

The Pros of the day were:  Kadence receives some of the best medical care around.  People travel great lengths to see these drs and its only an hour away for us.  Not only are they the best, but everything they do is absolutely free to us.  I don't know where we would be without Shriners.  I was grateful for two well behaved kids while we were there.  They do so well in Drs offices and I couldn't ask for anything better.  I'm grateful for a VERY patient dance teacher who didn't get mad at my little Shelby.  I am also most grateful for a friend who knew we would have a hectic/exhausting day text me this morning and tell me she was bringing us dinner after dance.  What a relief!  I don't think people realize how exhausted all 4 of us get after these appointments.  It was such a lifesaver.  I am so grateful to have such great friends who take such great care of me and my family.  I am also grateful that David only needed to take a half a day off work which was a bonus! The thing I am most grateful for is a great family.  Kadence is so cooperative and happy, Shelby is so caring and considerate of her sister and gets excited for her and David is one of the most supportive dads/husbands I have ever seen.  He is ALWAYS there for her appointments. 

 

 

The Cons were: I was exhausted and still had to do homework tonight.  David had to head in to the Dr for a bee sting.  He was stung while helping a neighbor on Saturday and it has gotten worse every day since.  It turns out he has a bacterial infection from it.  He was put on a steroid and antibiotic.  Normally he would have gotten an antihistamine but he's allergic so the dr skipped that step.  I always have a hard time seeing my baby get pushed, pulled, tugged, and prodded.  It's hard to see your child struggle.  I would do anything to take this from her, but I can't.  I don't like hearing the reality of things, sometimes its hard.  Lastly, Kadence STILL hasn't gained any weight.