Sunday, December 3, 2017

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!


Thursday, November 9, 2017

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. 
         

Sunday, October 22, 2017

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!

Friday, September 22, 2017

Touching the Toes

Kinley loves gymnastics.  Like LOVES it!  And she is so very good at it.  They call her muscles in the gym because her arms are ripped and the strength she has is amazing.  I have been debating telling her coach about the scoliosis.  But since we have yet to see a doctor, I decided to just wait.  Well, this week after practice, there were two coaches waiting for me as we were leaving the building.  I could tell they had some apprehension as to what they were about to tell me.  They started out with saying "Have you heard of Scolio.." at which point I cut them off.  Yes, yes I have heard of it.  I explained to them that we were already aware of Kinley and her curvy back.  The relief on their faces when they realized that this was not my first time hearing it about Kinley was great.  I kind of shut them down pretty fast since Kinley was standing there and is still in the dark about what is going on.  But, thank you coaches for putting yourself in an uncomfortable place to try to help this little girl out.  Early detection is key, and I appreciate anyone looking out for my little one.
When we got home after gymnastics, Kinley was so pleased to show me her new trick.  "Look Mom, I can touch my toes.  I can touch them so good that Coach Holly took me around to show all the other coaches how good I can do it."  Oh sweet baby, yes, yes you can do that so good!  I'm so thankful she thought they were gawking at her sweet toe touching skills instead of her twisted back.
Today Kinley woke up and complained of her back hurting when she bent forward.  This is the first she has ever said about pain.  And she pointed right to the correct spot on her back.  My heart broke for her once again at that moment.  I wake up every day in pain.  And the fact that this might be the reality for my daughter....Ugh, I don't know how to process that.
Shriners is not able to see Kinley until the beginning of November.  We put her on the cancellation list, so hopefully something comes from that.  In the mean time, I am doing research like crazy and looking at places that can provide a second, third, fourth, and so on opinion.
You got this Kinley.  Mommy is right here, standing by you and willing to do anything to help you in the coming months and years.  XOXOXO    



Monday, August 28, 2017

The Blog is Back!

 Well Hello there!  Its been awhile!  The blog has taken a bit of a rest this past year and a half because really, our lives have been pretty normal.  I love keeping a blog so the kids will be able to grow up and be able to look back on their lives and know what little turkeys they were.  The reality of it is our lives have been kind of uneventful in the kid department.  When I first started the blog, it was to keep in touch with family that lived so far away while I was pregnant with Carter.  I would update it with weekly pictures of my belly and sneak some cute ones of Kenai in there every now and then.  Then after Carter was born, it became an excellent way to keep everyone updated on his health issues. It was a way for me to type out my feelings about his struggles and accomplishments.  It was also a way for me to give updates after doctors appointments and not have to call or text multiple different people all day long.  Which brings me to the reason behind starting up the blog again.  And this time its not about Carters health.  That little guy has been doing awesome besides having to have 8 teeth pulled in the OR last December.
Today's blog is about Kinley.  Sweet Kinley is about to start Kindergarten and could not be more excited.  This little girl is an absolute joy in our lives.  She is funny, smart, and will always tell you the truth whether you want to hear it or not.  A few weeks ago, Tim and I noticed that she might have a slight curve to her spine.  Its something I try to keep an eye out for in our kids since I have scoliosis and I know it can be genetic.  So, I brought it up at her 5th year check up.  The doctor ordered an x-ray to see what was going on. As soon as I saw her x-ray pop up on the machine, I knew our suspicions had been correct.  Kinley actually has a 38 degree curve right now.  Which is pretty big for someone so tiny.  We have been referred to the Shriners hospital near by and are waiting to hear from them.  They will sit down and look at Kinleys chart before they call to set up an appointment.  This way they know if she needs an urgent appointment or if this can be put off for awhile.  I'm hoping they will call and say its no big deal and we can carry on with our lives as normal.  Unfortunately, that will more then likely not be the case.
So for now, we wait.  If you are the praying type, we would love for you to say a few extra prayers for Kinley.  And if you are not the praying type, now is a good time to start!  Both Carter and Kinley will be starting at a new school this year.  We decided to take the kids and put them in a school that was smaller and would hopefully be a better fit for their personalities.  I had a few reservations about making this change.  I can tell you know without a doubt I am so very thankful we went for it.  I know that at this new school if Kinley is struggling, the school will be there to support her.  If there are any kids that are mean to her, it will not be tolerated.  Kinley will thrive no matter what the situation.
I will update the blog when we have some answers.  Or when I just need an outlet to vent my feelings.  I have been taking this news pretty hard.  We have yet to tell Kinley about it simply because we don't really have any answers for her.  And at the tender age of 5, that is hard to comprehend.
Our motto right now: Bent not Broken