Scan

For those of you who are interested, here are some photos of Kinley's MRI.  The big white area you see in her neck and spine is not supposed to be there.  That is all fluid.  And it goes down her whole spine.  We are hopeful after surgery that fluid will start to go back to where it should be and stop pooling up.

Neurosurgery

This is a hard post for me to write, so its going to be short and to the point.  We took Kinley to Seattle this past week to meet with the neurosurgeon.  He was amazing, and so incredibly kind not only to us, but to Kinley as well.  He said she has the real deal here, and needs surgery.  Tim and I had already done our research on this doctor, so we knew we trusted him to do the surgery.  So while we were there, we got Kinley scheduled for surgery on February 20th.  She had to get a CT done so he knows how thick her skull is for when he places the screws in her skull for positioning during the surgery.  She also had to get lab work done and had her anesthesia consult.

It was a long day at the children's hospital.  We had both girls with us, and they did amazing.  The name of the surgery is Posterior Fossa Decompression with Duraplasty.  Lots of big, scary words.  I'm still in denial that my baby is having brain surgery. I know Kinley is going to be my strength through all this.  She is so strong and such a light.  My tough little trooper!   

MRI #2

Because Chiari 1 was found on the first MRI, the neurosurgeon wanted to make sure a full brain MRI was done before we met with him.  Unfortunately on the first MRI we only got the spine, so back to the hospital for another one we went. 
In true Kinley fashion, she rocked this one yet again.  After she was given some Versed, she kept saying "I just feel so lazy".  Ahhhhh, love that girl!  Thankfully we got all the pictures we needed for now, so no more MRIs for a few months!

Brace It

Kinley got her brace for the scoliosis right before Christmas.  She did amazingly well that day with people fussing all over her.  Shriners was making a new commercial, so they took some pictures of Kinley wearing her brace for the first time.  And how cute is the brace they made for her doll???

Since then, Kinley has been able to get the brace as tight as it needs to be and is wearing it about 20 hours a day.  She is a rock star and I am so proud of her.  Very few tears have been shed over this.  She has had to learn how to dress herself with it on and go to the bathroom.  I couldn't imagine wearing this brace, yet Kinley just takes it in stride. She is my inspiration!

MRI

Little Kinley had an MRI over Thanksgiving break to see if something was causing the Scoliosis.  She was so cute and brave at the hospital.  Never once did she complain about not being able to eat before hand.  She had Versed before the MRI to make her a little relaxed while they put the IV in.  She had to have two attempts at the IV, so we were glad for the meds on board, since she was pretty drowsy.  After the MRI was over, she was being a little ham in the recovery room.  I could not believe how much she was talking to the nurses!  It was cute!
When we were walking out to the car, Kinley got mad because she thought we hadn't  done the MRI yet.  She still was so confused from the sedation that she insisted we were leaving without doing the procedure!  Got to love the good meds these days!!!

The results from the MRI were surprising and not what we were expecting.  It showed Kinley has Chiari 11 Malformation and also Syringomyelia.  It is probable that these are what is causing the severe scoliosis.  So, its off to meet with neurosurgery.  Tim and I did some frantic research after we received the results, looking for the best neurosurgeon around.  Fortunately, we felt really good about the Doctor in Seattle, so we are waiting for an appointment with him.
In the mean time, we are going to go ahead and get a brace for Kinley to hopefully keep the scoliosis from getting any worse.  She was fitted for the brace this past week, and will get the brace the week of Christmas.  Kinley had an idea of exactly the pattern she wanted on the brace when we got to Shriners.  And they are going to try to make it work for her!  She was so excited to know they were going to try to create her vision for her.  
These new diagnosis are both surprising and so upsetting.  Our course of treatment has totally been changed because of this.  And neurosurgery sounds so scary!  More then likely Kinley will have to have some kind of decompression surgery.  After decompression surgery, research has shown that 33% of patients have a decrease in the scoliosis curve.  33% don't notice a change.  And 33% have the curve increase.   Hummmm, not as great of numbers as we were hoping!  I dreamed that this might be our miracle to make her spine straight.  Just a little neurosurgery, and then we could kiss scoliosis goodbye!  The reality of it is many kids still have to be braced for years to try and straighten out the spine.  But, maybe, just maybe this could be our answer.  We can always hope!
Through all of this, Kinley has been extremely chill.  She has not complained one bit, and does everything that is asked of her.  What a trooper!  We love you sweet Kinley and are here fighting for you every step of the way!    

Getting fitted for her first brace!

Shriners

Today we had our first appointment with the Orthopedic surgeon.  We have only been waiting 2 months for this appointment, so Tim and I were both prepared with questions and ideas.  First they took x-rays of Kinley again.  Shriners has a low does x-ray machine that was so neat!  Thank you to those donors that made that machine happen!

 At the end of August, Kinley had a curve that was measuring 38 degrees.  Today it measured 44 degrees.  There is always a 5 degree difference taken into account based on position, the person reading the x-ray, and what not.  So, her curve has gotten worse over this little bit of time.

The thing we were not prepared for was the curve is atypical.  Being that Kinley is our child, we should have assumed this would not be a typical scoliosis case.  Her spine is just curved, not twisted.  There is usually some rotation of the whole spine, and Kinley is not showing that right now.  With those findings, we need to rule out other causes before we treat the scoliosis.  So, Kinley needs to have an MRI done to check for spinal cord tethering, Chiari II Malformation, etc.  Because of her age, we will need to sedate her.  And getting that appointment is going to take a few weeks. 
If everything checks out on the MRI and there is not an underlying cause, then we will discuss treating the scoliosis.  We are talking casting, bracing, or surgery.  And also how we are going to go about doing physical therapy. 

Not sure what we are hoping for here.  None of the outcomes seem better then another.  One thing I do know for sure is Kinley is one tough little girl.  She is ready to take on whatever is coming her way. 

 Love the name tag Addison was given.  And this appointment was obviously exhausting. 
         

Upside Down

This is what Kinley looks like much of the time.  Standing on her head!  It cracks me up and drive me nuts much of the time.  I am a lot more tolerant of it these days however.  I keep imagining her in a brace around her little body 20+ hours a day, and I am ok with letting her jump around and stand in all sorts of positions.  

I love this girl more then I could ever begin to write down.  And this diagnosis has hit me hard!  I am frantically trying to find a "fix" and I keep coming up empty handed.  I feel like I am finally getting somewhere with my research.  I have found a local family who has a little girl with Scoliosis.  They have been dealing with this for 4 years now.  I met with the mom yesterday and tried to get out all my questions and worries in the short hour and half we talked.  Most of the time was spent sitting in a coffee shop with a person I had just met, crying from both of us, as we were sharing our stories and concerns.  This Mom is a great resource for me, and I am so very thankful to have met her.  She gave me some good direction, and I feel like I am going to rock that first appointment with the orthopedic surgeon. :) 

Kinley still doesn't know something is wrong.  I am hoping to keep her in the dark until our appointment.  Once she hears the word Scoliosis, she will never be able to forget it.  So, enjoy these last few weeks with out scoliosis in your life little one.  Your Mommy is working so very hard to find the best treatment for you.  I love you so very, very much Kinley Grace.  I am right by your side through this journey, and I will never stop being your biggest advocate!